Dina's Boob Blog

All Aboard The Chemo Train...........

2012-02-13T21:03:00.000-08:00

Last night and all day today, I prayed for peace. I prayed for peace to wash over me, no matter what the news turned out to be today. Did I pray for healing? Absolutely, in fact, I've been quite adamant about praying for healing as of late. And I will not back down. I did get what I prayed for today however, I got peace. Complete peace when faced with this new news. This new path of which I am about to head down. It seems that yes, cancer is indeed what has caused the damage to my shoulder bone. In fact, I have reactivated bone mets (short for metastasis) in the places where the old ones were, and new ones. To be specific, I have bone mets on both shoulders, both legs, my spine and my ribs. They believe the pain I have been experiencing on my right side is indeed that, the bone met on that side. Once I received this news my doc has me whisked off to imaging again to have all my bones xrayed to make sure they weren't further damaged like my shoulder was - at risk for breaking. Blessedly, they are not - they are in good shape. It's like a breast cancer tumor is just sitting there on the bone, in the places I've mentioned. Needless to say, PJ and I were quite taken aback - I was prepared for the met on my shoulder, that just made logical sense to me, but not all the others. I also am a little annoyed that I haven't had a PET scan for over a year, we were so focused on the liver, we kind of let that slip I guess, but, there's nothing to do about this now - so let's move forward.

The test also showed conflicting information regarding my liver. In fact, my doc said that 2 radiologists were 'arguing' over my scan. ?? It shows the tumor areas as smaller than before, but reading hotter for cancer cells. This is completely contradictory of one another. (of course it is! it's me!) so I am settling for no change. AND to make things more confusing, my blood work again is perfect, and my tumor markers are DOWN. What the chicken?

We are putting the kabosh on quadrasphere - which, I have to say, I am thanking the Lord above. I am so happy to not have to do that again, I was ironically telling PJ that I would almost welcome that chemo chair before doing quadrasphere again - well, be careful what you wish for. Yes, I will be starting a new chemo treatment plan on Friday. It's a new drug, recently approved by the FDA by the name of Halaven. It is a 21 day cycle - I have treatment day 1 then day 8 then take a week off. Back to the chemo chair. Side effects are minimal this time, thank God. And this is my first experience at CTCA for chemo infusion - who are much more proactive with side effects and such rather than reactive - in fact, my care manager and I have already begun to discuss how to start handling some of the side effects now.

Now that the facts are out of the way, I can get to the feelings part. I am not afraid of this news at all. I have no idea why - wait - yes I do - I got what I prayed for, I got peace. I know this is manageable - bone mets are way easier to tend to then the liver thing - and knowing that I'm starting a chemo infusion with minimal side effects that will treat both? I'm oddly excited to get started. I know - crazy right? This new drug is made from a sea sponge - how frickin cool is that? Am I pissed I have to plant my ass back in that chemo chair? Absolutely - pissed and horribly inconvenienced - but - I am supposed to be relieved of this pain that I have been feeling for the better part of 3 months now, within 3 days of my first treatment. The pain I have been experiencing has been sending me into a dark place thought wise - a place I do visit on occasion, which is normal, but I have spent the better part of the past 3 months in this space, and have been keeping it entirely to myself. On the ride down to CTCA, I finally and quite spontaneously opened up to PJ about this, I explained to him that I was usually pretty good about talking and praying myself through these times, but lately I just couldn't do it - and I don't want to be in this dark place. I don't want to think about myself dying, of never seeing my kids grow up, of not being able to take care of my family - and this has always been shit I've thought of, but when you are in pain, it makes it much more vivid and real and scary. Long story short - I asked for help. From him, and then today, I asked for help from CTCA. I'm not used to doing this, and what I noticed myself doing was me showing up for these CTCA appts and treating them just like something on my To Do list. Putting the tough girls face on, smiling, joking, like I always do. Never have I thought of them as the place for me to let my guard down and just open up completely. Shame on me. This was difficult, and I'm not ashamed in the least to say I'll be seeing their psychologist here pretty soon. Looking forward to getting some help from someone to help me put this in perspective and hopefully gaining some tools to help me climb out of these dark moments. And, I realized it's not fair to my husband to keep this to myself either - he wants to help me, and he can't if I don't share what I'm thinking. So this was extremely powerful for me this visit - and I feel very positive about it.

I don't know how long I have, 10 min, 10 days, 10 months, 10 years, 40 years - but I don't want to spend whatever time that is being scared or fearful - I want it to be full of life, and love, and family, and friends, and giving and helping others. No time for bullshit or other peoples bullshit or drama, life is just way too short. I want to surround myself with people who want these same things out of life, learn from them, and hopefully be an example to those who haven't quite got it yet. To be completely dorky and quote Mandisa, 'I want the Truth that I believe to be the definition of me'.

So I start treatment on Friday - so prayers please that I react ok to this new drug, that it does what it is supposed to do, and also prayers that PJ's job will work with us on allowing him to take me to treatments. It is so much to ask I know, but he is the most trust worthy guy, I hope they know that and will allow him to make it up elsewhere - because he will.

I want so badly to keep our lives on course, as much as I can. I want to keep our plans to go to NY for Thanksgiving, to have a sleepover with Madeline this weekend, to give Ginger the bday party with a princess that she wants, to try to take a weekend away with just PJ and I, to see PJ's cousins and their kids over Easter - all of it - life doesn't stop because of cancer, life doesn't stop because of chemo. Everything keeps going - and don't want to miss any of it. Please, Lord, give me the strength, the healing, to power to go through this and keep going as a wife, a mother, a woman of God, and sister in Christ. Please, give me the strength.

God Bless -

Dina

Dina's Shoulder - The Newest Carnival Attraction

2012-02-08T21:18:00.000-08:00

So, I finally got my appt today at CTCA. I had been waiting and waiting and waiting for my interventional radiologist to call me back, which, he never did. In retrospect, this is not entirely a bad thing. Because I have a new interventional radiologist now, who is awesome and treats me like a person. Anyway, saw him today and he gave me an entirely different interpretation of my last CT scan. Get OUT - right? So, he says he can't really be sure that there is new growth on the right side - can you believe it? He described to me what cancer looks like on a CT scan and this didn't really look like that. He didn't really know what it was - vascular irritation was a possibility. So he recommend I have a PET scan so we can really see what we're dealing with, then either schedule another quadrasphere if it is, or take some time off if it's not. And as I still am dealing with so much pain when I breathe in on my right side, he did a full ultra sound on my abdomen, all of which came out fine. My bloodwork came back fine, my liver function is normal, my white and red blood cells are perfect, and my tumor markers were even down. Isn't that crazy! So we decide that I will start taking Alieve for the pain instead of popping all these Advil, see if that helps, schedule the PET scan for the first of March then see if we need a quadrasphere or not. Sounds awesome right? Right, it is. Except here's where everything went in a totally different direction today.

My shoulder has been hurting, I think I've mentioned this here before. So he does this physical exam which generates some pain, then he decides to do an ultra sound himself on it, just to take a peek. Nothing. We agree to try to strengthen it up by doing some stretching at home, to see if that improves. Ok.

Off I go to my oncologist appt - check up time. He reviews everything that I just went through with the interventional radiologist and upon his physical exam of me - he notes my pain when I breathe in like before, and my shoulder pain. He says he wants an xray of my chest and my shoulder. Just like that - they send me back down to imaging and there I immediately have my xrays - so frickin cool that this happens this fast - and the results are given within like, 10-15 min, no lie. He reports to me that my chest is clear - thank you Jesus. My shoulder however, has a hole in it. Yea, you read that right - my shoulder bone as a hole in it - about the size of a nickel. I respond with 'what?!?' and he says "yep". I look at him and say 'well, it's cancer isn't it? what else could do that?" and he says he doesn't know. That he's never seen it in this particular bone before, so that part just doesn't make sense to him. I just continually seem to baffle everyone. He and PJ then begin to chat that perhaps this is degenerative, or maybe I've always had this. Nobody knows. Point is, he doesn't want to wait to find out - so now I have a PET scan scheduled for Monday morning. Ugh.

AND - to boot, I accidentally OD'd on Vit D today - did you know you could do this? Well, I did with this new supplement I've been taking - and my naturpath informs me that the dose I was taking is at toxic levels. Well, I certainly felt toxic - it was awful. Better now though - thank God.

So I have to admit, I was freaked out at this news. Freaked out. Then, as I vented to PJ (thank God he was with me) I was able to calm down. I told Dr. Nixon that I was scared - and he said, well, if it makes me feel any better, if it is cancer, we just shoot it with radiation to kill it and stop your pain. What we are treating on the liver is way more important than this, that there is an easy fix to this. Yes, that does make me feel better actually. So I process this through, while feeling these awful flu like symptoms from the stupid Vit D - then something just kicked into gear for me. I looked at PJ and said "well, ya know - this whole hole in the shoulder bone thing could really earn us some extra money. I could be a new game at the county fair, have people like, toss a small ball through it to win a prize". Then we began to brainstorm on all the uses for this, you could string your purse through it, you could put an earring through it, you could go hardcore and pierce it with some sort of spike or something. If I was really desperate, I'm sure the adult film community could find a use for it. (kidding) Point is, is I need to tune into my sense of humor. I've lost that so much lately, and if I sit and be sad and scared and wallow in this sea of self pity - then not only is life passing me by while I do this, including my children lives, it totally plays into the fear. I refuse to do this anymore. I can hear the Holy Spirit guide me through this (which dr and which procedure is right) trust the Lord has my back here, and live my life. Yes, my life has a lot of dr appts and tests and other things in it that remind me of my cancer all the time - and I continue to have moments that it totally pisses me off - it reminds everyone of my cancer - but there are other parts of my life that aren't centered around that. That's what I'm going to intentionally focus on. I have been in this fog the past couple of weeks, and I'm telling you, it's like this news lifted this fog right out of my brain. Am I tired of being in pain, yes, and this can only be one more step towards ending this toxic way of thinking. I'm missing everything when I think like this!!!! So that's what I'm working on.

I'll know more on Monday - so until then, I'm livin life the best I can, pain or no pain. We'll figure this out. This may sound totally hokey - totally 'Jesus Freakish' - I don't care - I'm as surprised as anyone else that this is where my brain is just a couple hours after receiving this news. Perhaps my beautiful prayer circle was heard loud and clear yesterday, eh? My devotion for today said this:

I am above all things: your problems, your pain, and the swirling events in this ever-changing world. When you behold My Face, you rise above circumstances and rest with Me in heavenly places. I guarantee you will always have problems in this life, but they must not become your focus. When you think of yourself sinking in the sea of circumstances, say "Help Me Jesus!" and I will draw you back to Me.

I'm telling you, my brain just went there - I think it was kind of a decision, but more like an unconcious shift in perspective. Crazy.

So there we have it. Thanks for you prayers - they help so much I can't even explain. I've been asked to give my testimony for the church this month, which really just warms my heart. I know I am supposed to share - be it speaking, music, leadership - I know I am supposed to share and serve. I just know it.

God Bless

Getting my BRAIN back in the GAME.....

2012-01-29T20:22:00.000-08:00

Well the results were as follows: left side seems stable still (yay!) but the right side now shows new small tumors. So, I am going to have to have more quadrasphere procedures, which, I have to admit, made me literally feel like I was going to throw up as I was speaking to the interventional radiologist. Now, they did tell me from the get go that it was typical to have 'multiple' treatments. Ok. So I'm not the exception to the rule, which I really wanted to be, so that is ok. At least this is normal, and I take some sort of sick comfort in that. Next, I really thought the new tumors on the right side was scary information, but then it was explained like this by my case manager. She put it this way (paraphrasing of course): it takes like a million cancer cells to show up on these CT scans, and the quadrasphere procedure not only kills the cancer cells, they apply it to the blood supply of the tumor, cutting it off - essentially killing it from both sides. Now, that blood has to go somewhere, so they figure what is showing on the scan now has always been there, they just couldn't see it till now. Again, I take some sick comfort in this as well. Oh, and did I mention that treating the left then the right is considered ONE treatment? Yea, didn't know that either. And I'm probably going to need 3 - count them - 3 - treatments. Which means 4 more times for this crap. Breathe Dina, breathe. I can do this, I don't want to do this, but I can do this. And, I found out the chemotherapy they are using is Adrymiacin - otherwise known in my unfortunately every growing breast cancer community as 'the red devil'. No wonder I've been so sick!!

Now, I just need to vent here a minute- because this last treatment was worse than the previous, and I now have more information as to why. The tumors they treated on the right side of my liver were very close to the very edge of the organ, which was then very close to my diaphragm, very close to my lung. I just spoke to a interventional radiologist, as I've been trying to speak with MY interventional radiologist (I just like typing that out a zillion times) but he never called me back after 2 weeks so I finally got this great guy who called me on Friday night around 6pm. He explained this to me - which probably explains why I've had these sharps stabbing pains in my side when I breathe in deeply, severe right shoulder pain, I've basically had pleurisy for the past week. Do you know what I thought it was? Tight muscles or me just not moving enough - so you know what I've been doing all week? Planting my ass on the treadmill at the gym making myself push to to the weight loss setting and 3 miles in 40 minutes. With pleurisy!!! Isn't that hysterical!!! There I am, having trouble breathing thinking 'wow it's hard to breathe, I better adjust the incline a little higher and work this out'. DUH!!!! So, those of you out there getting this procedure, heads up - ask where the tumors are that they are treating and if this is any possibility so you know what to possibly expect in your recovery time. And then if you feel those things - don't get on the treadmill!!!!! Oy. Seriously.

There, I feel much better now. So now I have to go in for an ultra sound on my gall bladder (still trying to figure out why that is important to check - Sean?) before we schedule another quadrasphere. So I figure I'm clear the month of Feb, which, to be honest, I'm quite excited about. The more I do this, the more I'm learning, that's for sure - just a real shitty way to feel while I'm learning, ya know?

I'm not sure how I feel emotionally. Sad I think, at first, and I'm working through that. I really wished I would be the one person who miraculously could have been done just after one procedure. But I am not. It's just that this, this procedure, has been the worst throughout all of this journey - and I will do it again, I will, but I really gotta work super hard and getting my brain back in the game, cuz it's not right now. I just want to feel better so I can run and jump and play with my kids. I want to feel better so I can run and jump and play with my husband ;-) and such. It's like just when I start to feel better, here we go again. And they haven't done many of these at CTCA so it's not organized or anything, again, very frustrating. All of that put together kinda puts you into a weird mindset, not a 'giving up' mindset, but an exasperated one I suppose. I asked the doc at the results appt 'how many times do I have to do this?' and he responded with 'this isn't a cure you know, we are just trying to extend your life as much as possible'. Ouch. Do I know that from his standpoint that this is true? Yes. Do I 'feel' like this is true? No. I'd be lying though if I say I haven't thought these thoughts: 'I don't think it's the cancer that's gonna kill me, I think it's the treatments'. This is just an ass kicker, and it scares me. Do I keep doing it? My oncologist is so gung ho about it, and I wholeheartedly trust him, so I take comfort in that. They did say there is a new infusion chemo that they have in their back pocket if we find this isn't working, so there's that. I just wish we could find it, ya know? I wouldn't mind having chemo every 2 weeks - or having quadrasphere every 6 months, if we knew it was keeping this thing at bay - ya know? I just want to find what it is so I can wrap my brain around it, tell myself to suck it up and then just frickin do it. I hate this flip flopping around trying all this different crap - hate it. Am I blessed that there are things to try? Lord yes, please don't think I'm not grateful for just having options, and maybe I need to remember that a little more. I just want something to work - finally. At least for a little while.

On a completely different note, I am actually able to pull my hair into this teeny tiny ponytail - I haven't been able to do that since I cut it all off way back in 2009. Kinda cool. And also a pain because it takes me way long to blow it out now. Am I complaining about having to DO my HAIR??? Hell no!!! Happy Happy Happy to just have hair, thx.

Still working on the whole trust thing. I do trust God, I do trust Jesus. I trust whatever they have in store for me - fact is, they aren't done with me yet - cuz I'm still here - walking around - so I just try to remember to make it count. To not waste time with BS, to make sure my kids know to be real and genuine and loving, and to make a difference, in whatever way possible. When I find myself wallowing in my own crap I make myself get up and get out and help someone else, that always just seems to put it all in perspective for me. Always does. And I find I hear the Holy Spirit working inside me much clearer when I do things this way. Some days it's easier than others, but for the most part, it just takes practice. So I'm still practicing.

Reading 'Battlefield of the Mind' by Joyce Meyers - which I highly recommend. And try to get it off Amazon, not her website. No offense, but since they now know me from her website, they will NOT LEAVE ME ALONE! I just wanted to read the book!!! Jeesh. Not that her ministry doesn't do great things, it does - but - OY. Anyway, I digress - I'm finding this book most helpful in fighting the things that come into my mind. About myself, others, strangers - you name it. Quite remarkable concept - so check it out.

Have a great week - I'll keep you posted.

God Bless -

Scared - Trust - Breathe - Scared - Trust - Breathe

2012-01-13T09:08:00.000-08:00

So Happy New Year and Merry Christmas and all that crap! We actually had the most beautiful Christmas - I was exhausted because of my recovery yes, but also because my girls did not go to sleep until 11pm Christmas Eve then PJ and I (mostly PJ I have to admit, but I helped at the end) had to set up the 14 foot trampoline that Santa somehow fit in his sleigh (luckily no questions emerged about this) in our back yard. We finally got in bed around 2:30 am and the girls were wide awake around 5. But, such is the life of Christmas time with small children. It was a blast, yawning all the way through it. Then we decided to celebrate New Years on NY time, so we were in bed shortly after 10pm. Nice. And yes, I sound like I'm 80 and don't really care to be honest. I own a shawl too by the way, and use it on occasion.

My niece from back east came and visited us just after new years and was here for 10 days, so I've really felt like the holidays are just now over for me - as I put her on the shuttle the other night. But here I sit at CTCA just finished my CT scan and am awaiting results and a check up with my doctor. I was so pumped up by the results last time, I'm trying to not feel like 'this is where the other shoe drops' for this one. Why do I subconsciously feel like that? Is it my innate nature to expect the worst but hope for the best? I hate this part - it doesn't get any easier, cuz I've been in this 'waiting' mode many, so many times before - I keep thinking I should be used to it by now, but I'm not. I just repeat the same things in my head that I always need to be reminded of - things like "I'm not going to let scan results determine how I feel' and 'nothing will ever shake me from my faith - not even cancer' and 'Father God will take care of me no matter what the results' and 'I will continue to ask for healing because that is what His word says he wants for all who believe in Him' and 'you still have to get everyone to school and work on Monday so let's just get in there and get this done so I can get back to my life thank you very much!' It doesn't get any easier. Now that I mention it, it doesn't get harder either, which is a blessing I guess. I think I receive information better now that's for sure - whatever it may be. My trust continues to strengthen which is also good. It takes work though that's for sure - I can feel it in my heart when I haven't tended to my faith like I should. I feel a distance, a kind of 'jaded independence' if you will. Don't like that. So I get back on my knees at my bedside each evening, that works for me. I like to fall asleep with Him on my heart rather than Mob Wives in my brain, although it is VERY tempting. Church of course, and running my MOPS group which is so near and dear to my heart. I was at a loss as to what to pray about with my girls at night. I knew I wanted to pray with them, but I just didn't have the patience for the 'God please bless my pillow, and my toys, and the Angry Birds game on mommy's phone.....'. I mean that's fine I guess, but they obviously aren't getting what this is truly about yet, and they're little, they shouldn't. So we've started just reciting The Lords Prayer at night with our girls before bedtime and it's been really cool - they totally have it memorized already! Pretty cool.

Anyhoo - I am always so conflicted on how to pray at these appointments. Do I pray for complete healing? Yes. Do I pray for strength in whatever the results may be? Yes. Do I tell Jesus I trust Him and fully commit to know that He knows best and I will handle whatever I get? Yes. Do I pray that this will be the last 'procedure' I ever have to have so I can eventually turn into one of those '3 month check up' people? Holy Crap Yes!!!! I guess there is no wrong thing to pray for - even though they are all different things. I find this part confusing.

I've decided to take some things off my plate to give me a little more breathing room. It's been hard, but so incredible helpful, I'm still getting used to it. I have backed off of my Wed bible study group - just for this semester. I found this last time I attended a class that I was turning into more than just an attendee - and was having a hard time saying NO to other things. So, I'm taking a break. I'm getting ready to back away from another commitment but - and I already know the response here - I'm considering auditioning for a play. I haven't had my acting shoes on in, let's see, almost 10 years? Really? Yikes. So, I'm really praying about it because the role is pretty demanding, as is the rehearsal schedule. I want to make sure I have the strength and energy to commit. We'll see - but so cool that I even want to do this. I am taking a class at the local theater for one person shows - and it's coming along quite nicely. Maybe I should focus on that only for now - not sure. Again, praying about this.

So - off I go downstairs now for my check up. Say some prayers if you could - and thank you all who do anyway for me. I can feel your energy coming my way. Those days when I'm so tired I don't think I can make it up off the couch to change the laundry, but I do? I know that is totally prayer giving me the energy. It's certainly not me!

I'll be in touch - God Bless -

Dina

She doesn't have any arms yet mom!

2011-12-19T22:16:00.000-08:00

Ginger says this is why Charlie (our chihuahua) can't jump up onto my lap. I think it's funny.

So, can I say pain? Can I say liver pain? How weird is that to even type out, liver pain. I didn't even know your liver could hurt - so weird. This last week has been painful - living on pain meds, and finally, I think I found the right concoction - 1 pain pill + 2 Advil = BINGO!!! So I did that finally on Sunday and finally, I think I found some relief. I mean, I'm still functioning, I don't want to paint the picture that I'm just lying there in the recliner all day, snickering to myself in a pain med trance and randomly laughing at nothing, I kind of do that anyway (just not in a recliner) I am functioning just fine, it just hurts is all. But finally, relief. Today was monumental - just Advil this morning, and didn't need a pain pill till 1pm. Yipee!!!

Whenever you read anything, you obviously form a mental picture in your mind, and I guess I feel the need to let everyone know that throughout this whole ordeal, I was able to rest in the hospital, and then the weekend day or two upon my return from the hospital - but for the most part, I run around just like everyone else - taking my kids to school, Brittany to her functions, running errands, volunteering, etc. All my stuff and my life continues to happen - despite any 'procedure' I endure. Maybe a little slower at times, but I'm still behind the wheel of my minivan singing Christmas carols with my girls. And ya know what? That's exactly the way I like it. My mother likes to say 'take it easy on yourself' or 'you need to rest more and take care of yourself better' and I guess it's your mom's job to say these things - but, just because I am out being a mother, aunt, wife, friend, member of my community - doesn't mean that I'm NOT doing those things, ya know? I really had to think about this - I mean, I am very, very in tuned to my body - I think most cancer patients are - I know when I need to stop, I know when I need to rest - I know when I can push it a little further and when I can't - and I respect my body telling me these things - I have to, or the consequences could literally be fatal. But, I'm not going to stop living - not ever. And I guess I need to admit, right here, right now, that I am a hopeless night owl. I am my fathers daughter. I will stay up late watching the most ridiculous things on tv, just because. I have no reason for it, I think it's in my DNA. There - I said it - I feel much better now.

Got my Christmas cards out - which, becomes more and more important again as a cancer patient. If people you don't talk to on a regular basis not hear from me with the card, they may think I died or something. I'M STILL HERE!!! CHRISTMAS CARD CONFIRMS IT!!! And I'm so looking forward to watching my girls on Christmas morning. They are really getting it this year, and watching them watch Christmas come is by far one of the coolest parts about being a parent. We have lots of traditions we've started, maybe too many - we have our elf of course, Elfie. Then we do 'What God Wants For Christmas' which is an interactive nativity scene we do together as a family and it's so awesome in teaching my kids about the birth of Christ - I wrap Christmas books and we open one a night and we read it together by the tree, we sprinkle reindeer food on Christmas eve out in our front yard. Yes - I am Christmas CRAZY. And now my kids are too. Something must be working because I've caught PJ singing Christmas carols like 3 times already, and that NEVER happens. Welcome PJ - welcome, finally, to my madness. I ordered one of those microphones that plays Christmas music and also turns your voice in an elf voice - have you seen this thing??? It is hilarious - PJ and I haven't even shown it to the kids yet - I hid it in our closet and we were in there tonight playing with it - he was trying to sound all Barry White sexy in this elf voice, and I grabbed it and started saying 'I'm a chemo elf, my liver hurts' in this elf voice. Hilarious.

I digress - so now I wait to see if they scan me or not - I guess there is a possibility they will not, which wouldn't make much sense to me. How else would they know if this is still working or not? In any case, waiting to hear back from scheduling to book that next appt. Knowing I get a break brings me sweet peace. We need to allow my liver to heal and repair itself after these invasive procedures. Liver failure was always a possibility with quadrasphere, something I didn't mention before, but it was. Still is I guess since these chemo filled beads continue to release for 2 weeks following the procedure. But again, I am careful to respect my body and the messages it sends me on how to tend to it.

Each Christmas since my diagnosis means something different to me. I continue to grow in my relationship with Christ, and I continue to draw closer to my family, and what 'holidays' are really all about. I look back at Christmases past, and can totally see how I just didn't 'get' it then, but, in retrospect - I only knew what I knew. I was all about buying the right gift for the right person, going way overboard with my kids, making sure the pictures on my Christmas card were the best, and I would be so stressed, so pissed off all the time, rushing trying to get everything done, and just making everyone miserable around me - only to lead up to Christmas morning and suddenly just expect everyone to 'hurry up and enjoy this!!! it's Christmas!!' And, I'm ashamed to admit it, but I used to really be concerned what people were getting me for Christmas! Now, I don't have this mastered yet, I'm still a work in progress, but this year I'm just so excited to be with my family. I look at my kids faces, I look into the eyes of my husband, I hold my mothers hand in mine, and I know it sounds corny, but I'm just so blessed to be in their presence - to spend Christmas with each other - and share food, smiles, tears, gifts, love, each other - that is what I am just so excited about. I just love Christmas, and each year, the reason is just a little different, a little deeper from the year before. Sounds like a God thing to me.

Merry Christmas

Dina

Oy, my liver - that smarts!!

2011-12-11T23:27:00.000-08:00

Well, 2nd quadrasphere is done. I have to say that I was really glad that I knew what to expect this time, and super glad I was put under for it as well. However, wanna hear something ironic? Remember the whole morphine pump that was supposed to make everything better? Well, it works much better if its plugged in. Can you believe it? I really think this is hysterical to be honest. There I am, pushing this button, like 4-5 times, not hearing anything, and nothing happening because, you got it, it wasn't plugged in. So, once we got that figured out, then it did seem to help me quite a bit, however, everytime I would wake up out of a morphine sleep, I'd feel really great and rested, then immediately have to throw up. So I once again was sick like, 3-4 times this time again. But again, I knew what this felt like, so I was ready for it, and moved right through it. I must admit as well, that I prayed all the way through these moments too, something I didn't do last time because I was way too scared. This too helped. By Fri morning, I knew I had to switch from Morphine to Percocet - and that seemed to do the trick. No more throwing up, thank God. Now, the pain, the liver pain I'm experiencing this time, is much more intense than the last time, so I am trying to manage that.

Also, this is strange, but everything I drink tastes sugary - makes sense I guess considering what the function of your liver is - I just think it's so interesting how this organ, and having major trauma happen to it, can effect your overall body operation. Managing this pain has been a challenge this weekend, a real challenge. My husband, children, niece, mother and friends who have watched my kids and fed me have literally been a God send. Where would I be without these gifts God as given me?

I'm going to try to get back into the saddle again tomorrow, but I am still not moving around real fast yet, which is just real frustrating. The deal is now that I will go back in a month, get scanned, see what the deal is, and 'take a break' which, is fine w/ me. I will welcome a break, if it is safe for me to do so. My doc says we need to be careful not to hit the liver to hard too fast because of the possibility of liver failure, minor detail. I just want this thing gone. I'm so over this.

So I've heard from Rep Paul Gosar, and Senator John Kyl, and Senator John McCain kinda blew me off. But the other two are going to bat for me, and I'm thrilled. I keep praying that I will continue to receive this ground breaking treatment, and stay with this awesome team of people who just seem so focused on fighting this thing with me. I get such an 'army' feeling from them, ready to conquer this on my behalf.

I'm fading a bit now, but wanted to check in and let everyone know I am ok, and am adequately medicated, oh my am I medicated. I'll write more later this week.

God Bless -

Dina

Twas The Night Before Quadrasphere..........

2011-12-07T22:32:00.001-08:00

Well, here we go again. Scheduled for another zap of the cancer cells tomorrow morning. Pre-op at 8am and procedure at 9. I am so optimistic, it's strange. I'm actually a little excited. I think because I know it's working it a huge part of it, but also because I'm feeling so good these days, maybe for the same reason. Who knows. I'm just full of hope.

Alright, I am scared too. I can't help but be afraid to think I am going right back in there to feel super shitty again, for like, 14 days afterwards - but at least I know what the worst feels like. And again, knowing that it's working, makes the blow a whole lot more bearable. Plus, as soon as that fear creeps in, gotta let God creep right in and take it. Practice makes perfect.

We had a great time at the Polar Express this past weekend. It was so great. The girls were just so excited, and I think the best part was one of the most unplanned things. We got there, had a great lunch at a local diner, checked in to our room, picked up the tickets, played in the snow, got into our jammies, took the train to the North Pole, had cookies and hot chocolate, met Santa, had dinner, then settled in for the night. Then, when we are all tucked into bed - PJ and Ginger in one bed, and Madeline and I in the other, I turn the TV onto 'Its A Wonderful Life'. The 4 of us laid there and watched the whole thing. Madeline asking questions the whole time, and really getting into the story. Of course one of her first questions was 'why doesn't this movie have any color mom? why is it in black and white?' but once we got past that, she was way into the story line. I have to say it was one of the coolest life moments I think I've ever experienced. I am so blessed. I have just the best little family ever.

I need to share a passage from a book I've been reading off and on here for awhile, and this passage is one that I read before I went in for my scan and results of the quadrasphere. It's one of those ironic moments - well, ironic is probably not the right word. In any case, here it is:

'God will speak to you too - straight to your heart. I can't promise everything will be okay. It may be; it may not be. But I promise, based of the faithfulness of God, that you can be okay. Just don't pull up that anchor. And never let go of the rope.'

I just think this is awesome. I needed a reminder like this. I wish I could write more here, but I should probably get to sleep since we have to hit the road by 6am. As of midnight I can't have anything to eat or drink till my procedure tomorrow. I'm starting to think maybe Taco Bell wasn't the greatest choice for dinner before this procedure where I don't eat for 2-3 days. Hmmmm. I'm going to go drink a big glass of water.

I can't thank you enough for your prayers, and if you could spare a few more, send em up around 9am tomorrow, cool? Bring It On!!!

God Bless -

Dina

Joy To The World...the death of cells......la la la la la

2011-12-02T10:35:00.000-08:00

So that is the final word after my scan last week - tumors are stable and dying. The awesome word again was used, necrosis which means via Microsoft 'lookup word search': the death of cells in a tissue or organ caused by disease or injury. Praise God!!!! I have to say - it was soooo difficult to walk in there and know that I needed to trust Him no matter what the results, but I give Him all the credit for the results. The left side, where the largest tumor sat like a big fat gross guy (I picture the snot guys from the Mucinex commercials - weird, right?) is dying - and the small ones he shot with the beads on the right side are as well. There was one tiny one that he did not get that was on the right lower side that is a bit bigger, but that is what they will address when we go back in and shoot it again next week. I can't imagine they will just go in for that tiny one, I have a feeling they will shoot the left side again, which, I am totally prepared for now. After discussing how awful this first time was, we came up with a plan to maybe fix somethings this time in. I'll be put under for it, yay, and then hooked up with a morphine pump right afterwards in recovery so it is all in place when I go up to my room. Plus, I went for a check up with my onc yesterday my dietitian said that my liver may not react as dramatically this next time. Kinda makes sense I guess, I mean when I had my very first chemo treatment my body completely rejected it - duh - it's poison - so it makes sense my liver would react the same way. I'm just so ready, now that I know it's working, to get in there and have them zap it again. Bring it ON!!! I can't tell you how blessed I am to have these results. Many don't, and I know that. I remember when I received these similar results after my first check up after theresphere, and I've decided I'm not comparing this experience to that - I can't. What I can do differently this time, is believe my healing is possible, and give Him all the credit for it. That is what I'm working on now. Also, my blood work yesterday showed by white and red blood cells completely normal which is awesome, my tumor markers down, and my liver enzymes much improved from the last set of labs. Yay! And I ask them too "Is this normal normal or cancer patient normal?" They say its normal normal. Yay!

So, I had mentioned I'd been struggling with my new role of taking in my special needs niece. I have. But I think I have made a huge jump with this struggle this week that I feel I need to share here. My dear friend who has special needs daughters, introduced me to a place called YEI - Yavapai Exceptional Industries and it is, mind blowing. It is a facility that subcontracts with companies to do piece work, thus finding employment for these special needs individuals. They provide jobs for every need level, and gives them an opportunity to earn a wage, albeit small, an honest wage and take part in society. They work at their own pace, with their friends, have lunch together, take breaks, go bowling, to the Y and exercise, have Hawaiian shirt day, go to the movies - such great stuff - all together, with each other. These are the same people Brittany has met through her SNAP program, so she already knew a greater portion of the people there. She craves purpose, and it is awesome to suddenly be able to provide her with a peer group. I filled out a buttload of paperwork and it all went through I guess, and she started this past Wed. For now, she will go 2 times a week, and it just gives her such purpose. I can't tell you how cool this is, and had no idea such programs were available for the special needs individuals in our community. Fighting with DDD right now as I was denied that benefit too, but I have appealed that as well, and we will see where it ends up. That will help with rides and respit care and just general funding and assistance, so let's see if I can get that pushed through too. Oy! What is with me and government programs!! I can't get out of one for me, and can't get one in place for my special needs niece!!! Doesn't make any frickin sense to me at all. Good thing I don't take NO for an answer, no matter which direction it goes.

We are now getting ready for the Polar Express this weekend, just the 4 of us are going and we are excited. Good snow yesterday, so it's going to be adequately Christmassy - and we are excited to usher in the Christmas spirit this way. Super excited.

Thank you all for your prayers, they have been answered. I am so blessed. What a perfect Christmas gift, I couldn't ask for anything more. I do ask for continued prayers for continued healing as I head into this next quadrasphere. There very well may be another after this. (rule of 3 - how oddly appropriate for me eh?) And all I read, over and over, and I get something different every time I read it, is Proverbs 3, Psalm 91 and now I've added Daniel 3. I am just in awe of such trust. I humbly hope to replicate this trust every day of my life. What an awesome release.

God Bless -

Dina

Alert The Press!!!

2011-11-21T21:28:00.000-08:00

Well, I did it. I sent out approx 15 press packages to the, well, the first 15 influential people I could think of to tell my insurance story to to see if anyone could possibly help me put the heat on Aetna and get them to change their mind. I have now appealed 3 times and they still won't budge. Wanna hear something scary? Technically, I don't have any primary health insurance right now. I did what Aetna advised me to do, declined Medicare and sent them proof, now they won't go back to the primary position. I hope at least 1 of my packages gets read by someone and they are moved to do something, anything. So frustrating and scary. But at the same time, I know everything is going to work out exactly as it is supposed to. I keep doing and moving in the direction that feels right, and I know it will all be fine. I have no explanation for this feeling. I feel like I am being 'led' through this I guess. That's the best way I can explain it. Cross your fingers please.

I'm feeling better - just get tired easily - but also think that is because I haven't exercised since the procedure and I'm so mad about that. I know I would have more energy if I could just get out and walk for awhile, something simple like that. PJ and I have worked out a new schedule next week that he take Madeline to school twice a week and I try to get a walk or bike ride in. We'll see. Best laid plans. Today was my first day with no pain meds, and that has been rather nice I might add. Gee, that may have been adding to me feeling so tired. Duh.

I go in for my CT scan on Wed to see how the quadrasphere went. And I have to talk about this for a moment. I have really been fighting such dark thoughts this past month, since my procedure. It's almost like my brain has gone right back to where I was when I initially took in my diagnosis. So scary, so depressed, so negative. I think about me dying, how much I want to be here for my husband and give him the life and marriage and wife he deserves, how much I want to be the mother to my daughters throughout their adolescence and young adult lives, how much I just want to grow with my family. I've never wanted anything more in my entire life, than to be alive to be a wife and mother. So simple one would think. So simple I thought before cancer. Again, pain meds probably didn't help but fuel this kind of thinking as well. In any case, today I turned a corner and I think it had a lot to do with the message at church this past Sunday. Pastor Jack preached about the burning furnace story in the Bible. I'd never heard this story before, but the gist of it is, there are these 3 guys with strange names who won't bow down to this ginormous gold idol of the king, because they follow God's commandment that you will worship no false idols, right? Well this pisses off the King who orders them to be thrown in the burning furnace. They state and I'm paraphrasing here, that they know that God can save them, but whether God saves them or not, they trust Him and all that He stands for and still won't worship a statue. Now, this is HUGE to me. Pastor Jack also talked about how we bargain with God sometimes, and how he thinks that probably makes Him laugh. I admit, I have done this. I have tried to bargain with God - and it usually sounds something like this, while I'm praying: Please God cure me and I will show everyone I meet what a great healer you are - I will spread your message far and wide. Now, I guess if you're gonna bargain, this is probably a pretty tempting one, even to God - but - it's a bargain nonetheless. What I'm getting at is this - He already knows my life plan. He already knows what happens to me. Any bargaining from me is just insulting. I need to trust. Trust Him enough to know what is best for me. I don't wait around, I move, hopefully in the direction He wants me to go in, and the rest - only He knows. Well, in case you're wondering how the story ended, God did save them, they exited the furnace without a burn on them. This convinced the King that maybe they were onto something here with this God thing, and ended up joining their faith. This is Daniel 3 in case you wanna check in out.

So here's my thing, I've talked about trusting God a bazillion times throughout my blog - but this time it rings a bit differently for me. I mean, I'm kinda running out of options here in the 'treatment' arena - and that makes me a bit nervous. It's been really great to be on these pills all year long this past year and have my months of 'denial' cuz that is pretty much what they have been. I knew the pills weren't working - they didn't work before, and I was taking a LOT more before. So trust kinda has a different meaning to me now. Trust means I know He knows what will happen to me. He already knows, and whatever that is I must trust that. Yikes. Putting it that way is some scary shit right? But I oddly find comfort in this. I hold onto His word that he wants me to have long, fruitful life, and I will try to make each day, each moment as fruitful as possible. That's all I can do. I mean, this isn't any different than an other challenge in this life, right? We move in a direction that we 'feel' is right, a direction we feel He has led us to, and check it out and see if it works or not. Same here, plain and simple. Deep breath - breathe. Whew.

My stress level is still pretty high. With my niece Brittany, I've really been praying for her and for me to be what she needs me to be for her. I've never done this before, so I am struggling here too. I tend to get frustrated easily lately, and have been praying for me to come to her with more compassion and love, and patience. Living with a special needs individual just changes your whole family dynamic. We just haven't settled in to it yet.

Then my mom is going through her treatment and I wish I could be there more for her. Right now I'm taking care of some financial stuff for her, so that takes time. Just want so badly to take better care of her.

My kids on the other hand, are AWESOME!! Ginger is taking ballet and loving it and Madeline just finished soccer and she loved that too. They are all jazzed about Thanksgiving and starting to go Christmas Crazy (like their mommy) so that is fun. We are doing the Polar Express this year so that will be fun too. Lot of fun holiday traditions coming up for us so that makes me happy.

Point is, I don't know what is going to happen on Wed. I don't know what this scan is going to show. God does, and as long as I stay focused on Him, I will be just fine, no matter what the results may be. Do I pray for total and complete healing? You bet your ass I do - everyday, on my knees, with tears streaming down my face, but I trust what He gives me, and I will not waiver.

Quadrasphere or no quadrasphere, I made 50 mini loaves of homemade pumpkin bread over the past 4 days. I should sell this stuff it is so incredibly yummy. Happy Thanksgiving all - please cross your fingers on the letters I have sent out - and prayers for Wed.

God Bless -

D

The Burn Means It's Working????

2011-11-03T23:09:00.000-07:00

So - I haven't posted since my quadrasphere because, well, to put it bluntly, it KICKED MY ASS!!! I must say, it was by far the worst recovery I have gone through with any of the treatment I have received in the past. I don't know if I was not thinking, was in denial, not sure. But this was horrible. The procedure itself went well. In fact, my surgeon said that once they had done dousing the left side of my liver with the chemo beads, there were some left over, so they went on my right side a bit. So there may have been a kind of 'double whammy' affect here as well, who knows. The day of the procedure, I don't really remember much to be honest. I just remember being in such horrific pain. It was liver pain, something I have never felt before. Now, as it was explained to me by one of the doctors, this procedure essentially killed a portion of my liver. Doesn't sound too pleasant, eh? The chemo beads not only killed the tumor, but it killed the portion of my liver on which the tumor sat. They also cut off the blood supply to that portion of my liver, another ouch. I can only explain the pain as the feeling of the most horrendous heartburn, acid stomach feeling, but higher up in your gut, like right below the middle of your breasts. I refused the pain meds initially (big mistake) and found myself vomiting Wed night then again Thursday morning about 3 times. They kept me an additional night to make sure I was OK. But I didn't eat for literally 3 days. I was so weak. Once I finally said yes to the morphine, it seemed to move along a bit better. Well, it's morphine - what wouldn't right?

I have to say, this experience scared me. Scared me in a way that shoved the seriousness of what was happening to me right to the front of my brain. It did this to both PJ and myself. I would look at PJ's face there in the hospital, and he just didn't know what to do to help me. I'm not the best patient either, I just want everyone to leave me alone. And I wasn't having any of anyone. When I left the hospital on Friday, I couldn't make it 50 feet without needing to sit down I was so weak from not eating. All I wanted to do was sleep. I'm better now, but still needing to take pain meds on a pretty consistent basis. It's like this whole thing brought back all the 'chemo' feelings back from when I went through them back when I was originally diagnosed. Like I was right back there again, only worse. Totally sucked. Which then of course plays the mind game with you as well. But on that front, I've been pretty good at making sure my thoughts line up with Gods word. Practice makes perfect. That and Psalm 91. (thanks Mary)

Next step is to scan me in 4 weeks, then do the right side 2 weeks after that. So we will see where we are then. Obviously going to ask for the morphine to be on tap when they wheel me in next time.

Halloween was great, its been so awesome to watch my girls grow up. They are just so precious to me. I know I'm their mom and am bias and all that crap, but my connection with my girls just continues to flourish and grow. They are such lights to me. They both have been consistently coming in to our bed at night to sleep lately. And I haven't really complained about this a bit. I find my girls, snuggling with my girls, so - healing. It's like they communicate with me in this non verbal way that is angelic, for lack of a better word. My heart is at such peace when I am with them. I feel like I'm not describing this correctly at all. It's just something I feel when I'm with them.

My insurance battle continues. They came back and denied my appeal. So I'm going to post my response here. Time to bring out the big guns. Scary part is, I essentially have NO PRIMARY INSURANCE coverage right now. I can't believe this. I'm currently constructing a letter to send out to everyone and anyone who will listen. I am so scared that CTCA will stop treating me. I can't stop this treatment - I just can't. I know nothing else but to fight with all I have. I should be fighting for my life, not my insurance coverage.

Getting sleepy here - and Madeline just snuck in. :-)

God Bless -

Dina

11/4/2011

Customer Resolution Team
P.O. Box 14462
Lexington, KY 40512

RE: Dina L. Mountcastle FAX: -1-860-754-0068
Case Number #2011101800836

Dear Sirs:

In reference to your response letter of 10.18.11 to my request for appeal, please note the following as my formal appeal of your position:

The mere wording of the exclusion in reference, ‘Non-Duplication of Medicare’ clearly defines itself. This exclusion is meant, and understood to mean, that when coverage is originally put in place (2008 in this case), the policy is not written to give duplication of coverage should Medicare be in place. In this case, it was not. Therefore, this exclusion, while meaningful, does not apply.

It is not stated within the wording of the exclusion ‘at any time during the policy term’ for which Medicare coverage may come into play. This exclusion clearly is meant as a safety to ensure duplication of coverage is not collectible by the insured.

There is no duplication of coverage. There was not at the inception of this policy, and there is no duplication of coverage now. The premiums paid to you from the beginning of the policy back in 2008 reflected that of primary health insurance coverage, and your policy has responded accordingly up until recently. The premiums continue to be paid to you presently reflect the same. Therefore, Aetna needs to respond as the primary health insurance coverage.

As I await your response once again, please note you will be copied on letters explaining this case in detail addressed to my state representatives, government officials, local and national media, our President, and my attorney. My life is too precious to me and my family to allow Aetna to force me to take a government program I do not want, didn’t request, and don’t pay for. It is wrong. It is unconstitutional.

It is astounding to me that I have to fight for my coverage at the same time I’m trying desperately to fight for my life.

Sincerely,

Dina L. Mountcastle
dinakay@hotmail.com
928-277-3001 cell

MMmmmm - chemo pellets........

2011-10-25T21:12:00.000-07:00

So here I sit, the night before my quadrasphere, and I just read my last post - and I have to say that yes, it hadn't sunk in quite yet when I wrote that. I am however, encouraged by my spontaneous, almost instant faith. It's when our human minds begin to wander that we tend to get anxious, depressed, fearful. Our hearts, or at least mine, knows instantly the direction I need to go. Our minds, another story. In any case, the last week or so has been difficult. It's almost like I regressed back to the dark place I was when I was first diagnosed. And I know my mind wanders, dramatically wanders. I remember the days of me being single in NYC and thinking I would take off a day or so to just sleep in, relax, just be lazy. Well, that was always a horrible idea for me. I would get extremely depressed if I just stayed in all day and did nothing. Like my mind would just create all these dramatic scenarios and I'd get all depressed for no reason. I realized I am the kind of person who needs to be out, productive, keeping my mind active and alert. So I know that it is not a 'cancer' thing, it's a 'Dina' thing. Whew.

I found myself wondering if I could have faith, yet be logical at the same time. Faith vs logic. Are they opposites or do they compliment one another? I don't think I've really made a decision on this yet, I go back and forth. I even posed this to my pastor, whom I went and visited with last week in an effort to thwart this mind trap I had found myself in. You know you've reached a certain plateau when the pastor stumbles over his words. Not because of anything I said, but I got the feeling my situation overwhelmed him. That point in a conversation where you just want to look at the person and go, ya know what, nevermind. It's ok - we don't need to talk about this, I can see this makes you uncomfortable. Ironic, eh? It was a fine meeting, I'm not complaining, it just gets frustrating to look to people for some sort of, I don't know, not answers, but comfort I guess? and just get the horrible feeling of just feeling bad because you kinda just ruined their day. I hate that feeling of making someone feel uncomfortable. It makes me want to just hug them and tell them everything is going to be ok. Isn't that funny.

So I think I'm going to need to write Oprah or Ellen, my state representative, the President - I don't know. I appealed the decision made by Aetna to move from #1 coverage position to #2 - I disenrolled in Medicare, received proof of that, showed it to Aetna and advised them in a brilliantly written letter which I will post here that I have been paying for my insurance since 2008 and I want it to stay that way, but alas, they have denied my appeal. I will appeal their denial, but my thoughts on doing that are a long shot. I know this. But effectively I don't have any primary insurance coverage at the end of this month. They said whether I take medicare or don't take medicare, the mere fact that I qualify for it gives them position to reduce my coverage. How the hell is that fair? So I am FORCED to take a government program I don't want, that I don't pay for? I am scared to death - that I will be forced to leave CTCA because remember, they don't accept Medicare - and I know in my heart of hearts, this facility, CTCA, can save my life. I'm paying for coverage they accept, but not able to use it because the insurance company I have been paying and continue to pay premiums to are now forcing me to take a government program. I don't know if I need to start raising money to pay for my CTCA treatment, or if I need to start raising money for an attorney to help me fight this bullshit - I have no idea. Funny that I'm supposed to be focused on fighting this disease and minimize stress - what a crock. Now I'm fighting insurance companies while I'm trying to get better. Needless to say I am praying and praying and praying on this. I can't even begin to imagine what tomorrow's procedure will cost.

So my nurse called me today and gave me the rundown of what to expect tomorrow. Nothing to eat after 8am. My procedure is at 2pm and I'll get to revisit all those precious pre-meds I had when I was having chemo because the beads are chemotherapy. So I'll get the steroid, the benadryl, the anti-nausea - those gems. I'm awake through it but get some fun drugs to not care that I'm awake. Lasts about an hour and a half, then I'm admitted to my room where I need to lay flat on my back for 2 hours. I remember that from last time. Drove me NUTSO. I'll be sure to ask for some happy pills so I can sleep through that part.

I've got my kids covered, but will miss them terribly. I know it's just a night, but I am used to being pinned in my own bed sandwiched by my girls, all arms and elbows all over me. The best way to wake up. I"m supposed to also do a breast cancer walk on Sat - but will speak w/ the doc about that. I know that I need to scale back. The amount of things on my calendar is a bit overwhelming. Back when I was doing the weekly chemo, I was real good about taking care of myself. I haven't been that diligent since then. Mostly cuz I've felt great, and partly because I really enjoy everything I volunteer to do. Maybe subconsciously I'm trying to prove something? Like there's nothing wrong with me? But the point is, I need to take care of myself. I need to scale back. So PJ and I are both looking at my schedule and we are going to see where I can pull back from everything I am involved in. Yikes. I just want to do my part, in conjunction with the awesome therapy I'm getting.

Well, I'm fading, and need to get some sleep so I can get up and eat before 8am. Please send good thoughts around 2pm tomorrow, k? Let's kick this tumors ass once and for all. And if anyone has any bright ideas about how to handle this frickin insurance insanity, please feel free to call me.

Pastor Mary called me right after the results had come in and relayed to me Psalm 91 - the Psalm she read to me during one of my first prayer circles, in fact, this Psalm was the one she read that made me go out and purchase the NLT version of the Bible, the one I carry with me now. This Psalm 91 is by far, the most beautiful and comforting passages of the entire Bible. The whole thing is awesome, but I'll share the ending to tempt you:

Psalm 91:14-16 - The Lord says, "I will rescue those who love me, I will protect those who trust in my name. When they call on me, I will answer; I will be with them in trouble, I will rescue and honor them. I will reward them with a long life and give them my salvation."

God Bless -

Dina

MY LETTER TO AETNA10/13/2011

Aetna Expedited Appeals
FAX -1-860-754-0068 – 2 pages total

RE: Dina L. Mountcastle
Aetna Advantage Plans

Dear Sirs:

I am writing to you to appeal your decision regarding the handling of my recent claims. Please note I am a Stage IV breast cancer patient, currently receiving treatment at Cancer Treatment Centers of America in Goodyear, AZ. I was originally diagnosed in 2009 and was receiving treatment at AZ Oncology in Sedona, AZ. When my cancer returned in March of 2010, I sought treatment elsewhere, as I had exhausted my options for quality care within the rural confines of my living area. I now travel over 100 miles each way to seek the quality care of treatment from Cancer Treatment Centers of America, and have continued to pay my monthly premiums for Aetna coverage on time, and in full.

I do receive disability, as I have been undergoing chemotherapy treatment for my metastatic breast cancer while raising my 2 young girls, ages 6 and 3. I was unaware that I would automatically become eligible for Medicare coverage upon 2 years of me receiving this disability. That is due to my own naivety, but feel compelled to mention nonetheless. This was brought to my attention by my primary care physician located in my rural residence area through a letter saying they would no longer be treating me as I was now enrolled in Medicare, a program they do not accept. I contacted Aetna Customer Service and was informed that Aetna has moved into the #2 coverage position (or supplemental) and that Medicare was now in the #1 coverage position.

I do not wish to receive Medicare coverage. I have dis-enrolled formally in this program and have attached proof of this for your records. I can afford, and have the right to choose, to have my insurance coverage remain with Aetna, through the plan in which I have paid premiums into since 2007. The only way I can continue to receive the quality care I have been receiving, and deserve to receive, is through my Aetna health insurance plan.

I respectfully request Aetna return as my primary insurance carrier effective immediately so I may continue my treatment plan, allowing my life to continue in accordance to the specific guidance of the team of medical professionals assigned to me at Cancer Treatment Centers of America.

I appreciate your time and look forward to hearing from you promptly.

Sincerely,

Dina L. Mountcastle
dinakay@hotmail.com
928-277-3001 cell

I'm gonna be "quad - ro - matic" !!!

2011-10-14T22:20:00.000-07:00

Well as I suspected - the tumors on my liver are 'progressing'. I was prepared for this today - and to be quite honest, I am so OK it's weird. Maybe it will hit me harder later? Not sure. My awesome doctor went and spoke with the surgeon who did the therasphere procedure on me last fall (can you believe it's been a year?) before he gave me the results, because I am going to a consult with him for a new procedure called 'quadrasphere'. This is totally wicked - get this - they go in again, just like before, through my femoral artery and deposit these plastic beads - this time, filled with time release chemotherapy drugs. This cuts off the blood supply to the tumors then attacks the cancer cells, killing them. They do this to one side of my liver, then I go back for a second time for the other side to be treated. Crazy shit right? I go for my consult on Monday at 12:30 and could very well be whisked in for this procedure right then. We'll see.

Now, maybe because I've had my head buried in Proverbs 3 for the past week - I just can't stop reading it over and over I keep getting different things from it - I'm not sure - but I am genuinely excited about this. I mean, yes, I wish I didn't have to do this at all, but this is what I've got. I trust God so much with this, more than I ever have before. I know I'm in the right place, I know this team of people are exactly what I need, and I know this is exactly what I am supposed to be doing. And I'm not saying this because I feel like I have to convince everyone else - which I totally used to do - even recently. I'm saying this because I genuinely feel it. My blood work is once again perfect and get this - my liver function test is also, completely normal. If that isn't God taking care of me, what is? I mean according to this scan, here I am with these progressing breast cancer tumors on my liver, yet my liver continues to function normally, and I feel great. This procedure is ground breaking, and new to CTCA - this is so exciting! I no longer have to take the Xeloda, which I am equally excited about - my hands and feet just look like they've been chewed on by Madeline's rat - so I get a little break from that. Wahoo!!! So now my only stress is trying to get my kids where they need to be, watched and taken care of while I quickly go and have this procedure done.

PJ got to join me today - and it was great and weird all at the same time. It's been a year, a year - since he's been able to go to these appointments with me - so it was a little strange at first. On our way there this morning, in the car, I shared with him that I have these moments of fear. That I am sometimes tired of this, that I get pissed that I don't get the 'normal breast cancer' experience like most. Basically bitching a little, crying a little. Then he said something monumental to me - he started explaining that our family didn't work, operate, function - without me running it. He said that through all of this stupid cancer stuff, I still give 110% to my family, and that not only does everything get done, but I still make time to teach my children about being kind, loving to others, praying, thanking God, showing respect. That I didn't just sit and stew or not get out of bed, but that I made the effort and that he noticed. Huge. This was huge for me. Not that I have felt neglected, I haven't, but it was super nice to know he noticed. I love him so much. He's just the best person. Such a good person.

So there we have it - that's where we are today. I'll let you know what happens Monday - for now I am focusing my weekend - cheering PJ on tomorrow morning as he runs a 10K - luvin on my girls, helping my mom pretty up her place, going to church and helping Brittany make dinner Sunday night. As hokey as it sounds, I am full of hope, love, trust in God, and a renewed spirit this evening. I highly recommend you google quadrasphere - it is wicked cool - and I also recommend you read Proverbs 3, equally as wickedly cool. :-)

God Bless -

Fall Break - Thank GOD!!!

2011-10-10T11:01:00.000-07:00

I never thought I was a 'fall break' kind of gal - but alas. Here i am, in my jammies, watching my little ones play on the swingset in the backyard still in theirs, listening to the clothes clink and tumble in the dryer. Smell of big breakfast still in the air in the kitchen. Cup of coffee in hand. Luv it. Do I wish we could have gone somewhere as a family? Yes. I miss my total family experience, something I feel like we've lost as of late. Still adjusting to my niece living with us, and all that entails. But, blessed that we are able to acquire her into our family, and reminding myself of that daily.

Well, my life just seems to keep getting more and more full. I have found myself saying lately that I felt like everybody was taking little pieces of me, and when it was all said and done, there was nothing left for me. Not a good place. But, I was frantically but thankfully able to attend the Women of Faith conference in Phoenix a couple weeks ago and although it wasn't real 'restful' I found it to be incredibly inspirationally filling. It filled me up with weeks worth of spirituality. Just incredible. So amazing.

I have been tolerating the additional medication OK. My hands and feet are showing the signs of the meds now, extremely dry, red, cracked, peeling - really attractive. And my big toenails are once again revolting. Not sure if this is just me though - I remember having issues with my big toenails in the past, and maybe this is just magnifying them. Lifting, etc. So gross and embarrassing. I start to complain and think - well - if this is the worst, you can deal, you've been through so much worse - then I think - NO! I'm just pissed I have to go through ANYTHING - and the vicious cycle starts once again. Oy. It just never gets old - so exhausting. I go for my appt on Friday, and will have a full body CT scan at that time. According to my doc - should we see the tumor has indeed grown again, which, I believe that is has, we will talk an additional increase in medication. Also, there are a couple more theresphere procedure that have been developed since my last one, which was a year ago next month - can you believe it? Well, instead of radiation being distributed onto the liver, actual chemo therapy will delivered there and will dispersed on a time lapse basis. Pretty cool eh? He seems to think I will qualify for this protocol. I am hopeful. PJ is coming with me this time, so I am taking great comfort in that. He hasn't been to these appointments with me for almost a year now - because of his new job. Weird eh? I am excited to spend the day with him - like the old days of having our 'cancer time'. AAAaaahhhhh. Our sweet cancer time. Isn't that funny. Still searching for the blessings. Just keep searching, just keep searching - they are always there miraculously enough.

Once again my trust in Him needs sharpened a bit - I'm getting much better about it I must say. One thing I got from the conference I attended was the words of Andy Andrews - who is an AMAZING speaker. Funny, down to earth, and not at all the 'preachy' type. He gave me this nugget - as long as you are sitting here breathing, God is not done with you yet. As long as you are sitting here breathing, there is hope. I luv luv luv this. I used to pray for just enough - but now I pray for abundance - so I can share with others. Praying for just enough seems selfish - so I pray for abundance of everything, so I can share and love on others. I know God has something very important, very specific in mind for me - and I can't wait to be led to it. Jut gotta keep my God ears on so I can hear the Holy spirit guide me.

I'm taking a class at the local theater to assist me in writing my one woman show then I get to perform it in May of next year. This is good for me, not that I necessarily need assistance writing it, but need someone to answer to to make sure I take the time to write it in the first place. And I really love the space - it's an old church, over 100 years old, that has been converted into a theater. I know this is where I'm supposed to do this show. So, I am on my way.

My Ginger had a breakthrough seizure a couple weeks ago, so we increased her meds and I watch her closely. I'm also going to start buying gluten free stuff and start to phase out dairy. I need to try - so I'm going to. Slowly. Not easy, but they actually make all sorts of stuff now that is super yummy - no difference. We'll see. This seizure happened on Madeline's school campus, just after I picked her up. It was not as big of a seizure as previous ones, not at all, but lots of vomit and this is the first time she's had one in 'public'. It was so 'revealing' - didn't much care for that feeling. Still working through it.

I realized after seeing my good friend Martha, that I had never posted the final pics of my new boobies - well, here they are. You'd think after all I went through, they would be perfect, but they are just like every woman's real ones, and they don't exactly match. Go figure. But I love them, my husband loves them, and I'm so glad I went through the whole reconstruction process. It sucked, but well worth it. I miss not feeling anything, I don't think that will ever go away. But so happy to have boobies - and perky ones to boot.

That's it for now - will post once I have my appt on Friday and let everyone know the outcome. Thanks for hanging with me - I know I don't post as much as I'd like, but am blessed that I am so busy being a wife, caretaker, daughter - and mommy - my most favorite role in the world. Sometimes, I need to just be Dina, and I gotta find where I can fit that in. She is kinda the one who started all these roles, and she needs tended to, tenderly.

God Bless -

9/11 10th Anniversary Speech

2011-09-13T01:23:00.000-07:00

My name is Dina Mountcastle. 10 years ago today, my life, my perspective, changed forever. I was 32 years old, living the single life in New York City, and running late to work, as usual. I had originally moved to NY in 99 as an aspiring stage actress, but soon realized I wasn’t willing to live off Ramen noodles and sacrifice daily comforts for my art – so I decided to focus on my day job and start to make a career out of it. I was fortunate enough to land a job working for a small insurance brokerage firm in the financial district, just a couple blocks from the World Trade Center. Riding the subway to work that morning was no different than any other morning. My commute consisted of 2 trains, and I usually emerged out onto Fulton street facing the North tower, then headed east to my office building. As we exited the train, we started heading up the steps towards the street. A normal morning commute consisted of lots of people, but moving in sync, rarely congested. But this morning, suddenly, everyone on the stairs stopped. Our routine was interrupted, and our heads which all habitually faced down, slowly turned up to the ground above – to see what the hold up was all about. I was probably a bit irritated to be honest, I was late for work anyway.

Everything moved in slow motion from this point – people began moving slowly out of the train station up onto the street. I remember I was emerging out onto the street and a woman on my train was next to me – we both crept out onto the street and looked up to see this incredible fire, billowing out of the middle of the building. We all were transfixed on this fire, and also, trying to stay under the coverage of the building, as things seemed to be falling from the sky. This woman and I, still standing next to each other suddenly grabbed hands as we looked up at the building – not really believing what we were seeing. People. People hanging out of the burning building, waving white cloths of some sort – people – falling – people - jumping. I squeezed this strangers hand, gave her a look as if to say “what is happening?’ and then let go and started moving towards my building. I never saw her again.

I only got about 30 feet when suddenly I heard this loud explosion sound, the ground shook and people I happened to be around there on the street corner all collectively let out a scream as we all lost our footing a bit. Only later did I find out this was the 2nd plane hitting the other tower. Grabbing a metal trash can to help me back up, looking to the sky for a plane dropping bombs, I ran as fast as I could the remaining distance to my building. Once in my office, we received sporadic information about what was happening. Sporadic internet, sporadic cell service. I remember just wanting to call my mom. Miraculously my first call to her went through where I told her to turn on her tv – and let her know that I was ok so far. We knew finally they were planes that had hit the buildings, not bombings. My coworker and I stood out in front of our building, watching the burning towers. I remember asking him, ‘how are they going to put out those fires? It’s too high up’ and ‘who hates us this much?’ Never in a million years did we ever think the towers would come down. Never. I stood there praying for my friend who had just started a job in the towers – trying to count the stories to see if I could get some sort of handle on where she was. I called her and called her, but no answer. Unfortunately, that is many people’s story. My boss at that time advised me to go and get back on the train and go home – the train I take home was directly across from the South tower. I grabbed my purse, but something inside me told me to stay. Something told me not to go back outside. I put my purse down, and waited. About 15 minutes later the building shook so hard we actually saw the aftershock ripple through the windows of our office - everyone, about 7 of us, fell to the floor. The sky had gone completely black, we thought a bomb had gone off either inside our building or in a building next to us. I panicked - and grabbed my things again and went to the stairwell of my building - as I opened the door, smoke billowed out onto our floor and I saw that there were people already in the stairwell - firefighters and building management people forced us back up onto our floors - they were all saturated in this white powder - coughing and some throwing up. The smell was something I can still smell to this day if I think about it hard enough. It’s not a smell I can even describe. We locked ourselves into our office at that point, as other people in our building were really panicking at this point, and we wanted to just seclude ourselves and try to stay as calm as possible. It was then when we returned to our office that we learned the towers had collapsed. I don’t remember if it was by a phone call, or an internet feed - I just remember us looking at each other, saying ‘gone? The towers are gone? “ Debris had blocked the entrance to our building so we waited and listened to the sporadic news - not really knowing what to do next. After what seemed like forever, we were given the go ahead to leave from our building maintenance crew. We decided to leave as a group – so my boss found some t-shirts, there in the office, ripped them up, rinsed them in water and we all covered our faces and started to head out. It was difficult to breathe and walking out onto the street was surreal. It was white – all covered in this grey white dust – and quiet. All I could hear were the faint sounds of what sounded like car alarms in the distance. I remember someone approaching me with a cup of water – but no one spoke. I can honestly say, I have never felt more small and insignificant than I did in these moments. Everyone had their faces covered, and our eyes were burning from the debris dust in the air. You couldn't see 1 foot in front of you. We all simply stayed close to one another and headed uptown towards the garage where my bosses car was parked. We passed by the hospital that was downtown, and I saw medical personnel sort of lined up, waiting to help all the injured – but there weren’t any. They were all just standing there. Once we got to the vehicle, it was clear things weren’t moving very fast. We weren’t getting very far, and we knew from the information on the radio, once we got to a bridge we were only allowed to go over once, we couldn’t come back into the city. I was the only Queens girl, there were 2 Jersey people in my car, so I hopped out, said I’d walk the rest of the way. This was around 14th street I think? I started making my way uptown. I remember walking, and seeing people crying, and handing out food, clothing, shoes, water, anything. It was like we all knew each other – we all had this strong sense of familiarity with one another. When I finally arrived at my train station at 59th street, I took a chance that maybe, just maybe the trains were running again and I could get back to my apartment. I didn’t know how to get over the bridge by foot, but I had made it this far, if I had to, I was sure I’d figure it out. There was no one around – no one. I made my way down the stairs, and as I approached the platform, my train miraculously, pulled up, and the door opened. It felt like a dream – I looked around, stepped onto the train and sat down. The train went under the river then popped up above ground in Queens. Once we passed Queensborough Plaza, the conductor stopped the train on it’s tracks as it made the turn into Queens, and you could see directly downtown, the smoke still billowing. He said over the loud speaker, ‘they’re gone – the towers are really gone’. And I just cried.

All I knew once I got home, is that I wanted to go right back again. All I could think about was getting back down there to help. I’ll be honest with you, other people didn’t cross my mind that much before this – I was what we call in our house a sort of ‘me monster’ if you will. What surfaced for me that day was this incredible sense to help, it was all consuming. Volunteer spots were hard to come by, but I was able to land a 1-4am shift for a couple nights at a food tent, feeding the rescue personnel who were down there searching for survivors, trying desperately to find people. One of the strongest memories I have is all the people posting pictures of their lost loved ones – pleading for help in finding them. Pleading with tears in their eyes and fear in their hearts. We all thought that there would be people rescued. But nothing.

I used to think I had to relive 9/11 every year – to make sure I didn’t forget it – I would make myself relive the day I experienced over and over – determined not to forget. I felt guilty for surviving. Why NOT me? Why all these others? It wasn’t until I spoke with my pastor last year that I realized, all this made me feel was horrifically sad. A heart wrenching sadness that is hard to describe in words. I had to search my heart hard to figure out what this day was going to be for me to reflect upon, what I was going to tell my children. Today is a day I honor all those who lost their lives in this senseless act of hate. First responders, normal people, going to work, earning a living, just like us. Just normal people. These’s people’s lives meant something, individually and collectively, and it is my duty to remember them, pay tribute to them, to honor them. They - are who ‘we will never forget.’ I heard recently on television as they interviewed the brother of someone who died that day say “heroes never die of old age, they die being heroes”. I never thought of it that way, how very true this is.

What I choose to relive now is the humanity I witnessed. I witnessed first hand the act of humanity come out of an act of terrorism. What better revenge for such hatred, then the compassion shown to one another in NY, and as an entire country, that day. Instead of going back to the terror of that day, I try to go back to the humanity. The faces of the people on the streets as I walked those 40 or so blocks – handing out water, shoes, food, towels, clothing, anything. And not asking for a thing in exchange. People of all colors, races, backgrounds, suddenly united on one front. That’s what I try to hold onto, that’s what I want to teach my children. I lift up the hearts today of those changed by this. And I thank the Lord above everyday, for my life that I’ve been so graciously given. What a precious gift sweet Jesus. Thank you and God Bless.

My Water bowl Runneth Over.....

2011-09-13T01:12:00.000-07:00

Wow - has it really been a month? Crazy. I can't believe how full my plate has been as of late. I try to be very intentional to NOT bitch about it - because it being full is a blessing all in itself, but still.

As I type here I have my Madeline next to me in my bed, she has been running a high temp this evening. PJ is sleeping in her little twin bed with Ginger. Madeline turned 6 on Sept first, and yesterday she lost one of her front teeth. I can't believe how much older she looks with that gap in her smile. So frickin cool. She and I have been hanging out in 'mom and dads bed' most of the evening, something she loves that she gets to do when she is sick, and she was resting her head on my shoulder as I watched Martina McBride's new single 'I'm Gonna Love You Through It' - which, by the way, is AMAZING!! Anyhow, we were watching it together, and I was crying a bit through it, and Madeline lifted her head up from my shoulder, looked at me, then asked if I was ok. I said that this song just made me cry, she rubbed my back with her hand, gave me a kiss on the cheek, then returned to resting her head on my shoulder. Wow. So grown up. Who is comforting who here, eh? My angel continues to comfort me - she is such an old soul.

So, this month has brought upon its set of challenges for me - and some amazing lessons as well. I'll start with a message received at church that has had a significant impact on me. The director of contemporary music gave the sermon last Sunday, and his message was super significant to me. He was talking about how the manner in which he was relayed the information when he was diagnosed with diabetes as a child effected him. Because it was presented to him in such a dramatic way, he realized he had carried this feeling with him throughout his entire life. Then, he realized that this way of thinking was nowhere in line with what God says about him, biblically. I have to say, when I heard this, it was like a light went off. I so often have thoughts that I am constantly fighting - thoughts like: you can't do that you're sick, you can't have that you're sick, you probably won't live that long cuz you're sick - that kind of crap. I never really felt like I had the weapons to fight against these thoughts - and this gave them to me. God doesn't feel that way at all - and if my line of thinking doesn't line up with God's way of thinking, then I really need to banish it from my thoughts - period. How frickin freeing is that! Pretty amazing, I've put this into practice and it is working really well. What a blessing, thank you Jake.

PJ and I have been feeling the financial pinch of our growing family. Adding another adult, mind you a special needs adult to our family has made a difference in not only our family dynamic, but our budget as well. And when it rains in pours, we realize this as our APS bill gets increased, we need new tires on the van, the brakes go on the van and our air conditioner is starting to go on the house. Just figures, doesn't it? So, there's that added stress I'm trying NOT to feel as stress cuz that's not good for my health. How frickin frustrating is it to know 'Dina - don't stress here cuz stress can cause your cancer to grow' - it's like trying to tell yourself you don't like chocolate when there's a huge piece of cake sitting right in front of you.. Life is stressful, I just gotta continue to challenge myself to move through the stress differently. Arg.

So get this additional nugget of stress that I'm trying to convince myself is not stressful. I am on disability - and - unbeknownst to me - once you have been on diability for a period of time, you automatically get enrolled in Medicare. Didn't know this. I figured since I was paying my health insurance through Aetna, that whether or not I qualified for Medicare, I was paying my individual coverage premium cuz that is the coverage that I wanted. Aetna I guess caught wind that I qualified for Medicare, and decided they no longer were going to be primary - they moved themselves to the 2nd position - supplemental coverage to Medicare. Problem? Yes - Cancer Treatment Centers of America doesn't take Medicare. I contact them and they ask me how we are going to go about 'transferring me out' of their facility. Excuse me???? I called Aetna and spoke with the ever flowing knowedge of a customer service rep who told me whether I declide Medicare or not, that doesn't matter - the fact that I qualify for it is all they need to move into second position. I remind them that I've been paying them first position premium for years and that this hardly makes sense. So then I'm put on hold, then they return to tell me that I can appeal this decision, plead my case and then they will decide if they will move back into 1st position or not. Now, luckily CTCA is being patient w/ me right now - but here's the kicker - I have to officially disenroll from Medicare, then show proof of this to Aetna, with a letter pleading my case as to why I want the coverage to stay intact that I've been paying for all along - and then wait for their decision. If they say no, then I have NO primary coverage at all - how is this even fair? Since when can I not chose to continue to pay for the coverage I've had all along? I am a pretty bright person when it comes to this stuff, and I know how to push - I just wish I knew which direction I was supposed to be pushing in - this medicare world is foreign to me. As if having frickin cancer wasn't stressful enough - this is just incredible to have to try to deal with. I'm trying so hard to just stay calm, to stay calm and listen and be guided through this process.

I've spoken before in my blog about my time living in NYC - and I think I've also mentioned on occasion the fact that I am currently registered in the World Trade Center Health registry so they can keep track of my health. We may never know if my cancer was caused by what I breathed daily down there for weeks on end, but they are keeping track nonetheless. I never really thought of me being there in the financial district on 9/11 was that big of a deal. I mean, 9/11 was a huge deal, but the fact that I was there just kind of became part of me. Something very, very personal - such a personal experience, but I think staying in NYC for 6 years after, the fact that I was THERE wasn't really a huge deal, I worked with lots of people who were there. What I'm getting at I guess here, is now that I'm in AZ, the fact that I was there on 9/11 is kind of a big deal to people who live here. PJ and I had called to inquire about a benenfit dinner going on last month to raise money for the memoriam in NY and in my discussion with one of the organizers, it came up that I was there. Long story short, they asked me if I would speak about my experience that day at the dinner, then at the ceremony on the Courthouse Square on the 10th anniversary. Wow. I did this, and I have to say it was probably one of the most difficult things I've ever had to do - ever. Anyone who knows me knows that I am not afraid to speak in front of a crowd, but this was different. This was my own, private, terrifying, horrific experience - and I shared it in front of a lot of people - something I had never done before. Looking back I think maybe I spoke about that day, in detail, to maybe 2-3 people. Family. That was it. In any case, it was something I felt deep in my heart that I was supposed to do. Why? Not sure - just know it was something that was presented in front of me, and that I needed to agree to it and do it. And I did. I've posted my speech separately for any who care to read it.

Other than all this - I've been feeling pretty good. Tired. But good. I seem to be handling the 3 pills a day fine. I think I'm a bit paranoid about it to be honest - I need to chill out about it. I am just so tired lately - that's about it. I don't know what God has in store for me here with all of this going on. This insurance thing scares the crap out of me. To think I possibly can't go get treatment where I want to receive it just really scares me. I just pray that I am able to rise above the bullshit and hear Him guide me. That's the key - to be able to recognize our humanness and connect spiritually - and be led spiritually. Hard to hear sometimes - gotta pry the mufflers off. Oy.

That reminds me of a section of a Psalm I just read - that sounded like the same kind of plea I'm making here - Psalm 119:5 - "Oh, that my actions would consistenly reflect your decrees!' - I love that is starts with 'OH' - cuz that's exactly how I feel lately, like I'm crying out to hear Him, frustated with my humanness.

Off I go to takes Mads temp. *yawn* I bet all 42 year old moms of 6 and 3 year olds are tired - not just cancer making me tired, it's mommyhood - plus cancer drugs. ;-)

God Bless -

Mom when you get old, can I have your hair clip?

2011-08-12T20:54:00.001-07:00

I'm helping Madeline brush her teeth tonight, and she says this. I have this clip holding my bangs back cuz I'm growing my hair out again, something I've been afraid to do since it started growing back, but now just feel like what the hell. Anyway, she says 'mom, when you get older, older than me - can I have that hair clip?' I asked her 'how old?' she says 'like, 70, or 80 - maybe 84'. I told her sure - no problem. Just recently do I think about living that long. That that is even a possibility. Funny though - I am constantly wondering if any ache or pain or fatigue or anything that doesn't feel 'normal' is my cancer, coming back, doing something bad. I don't think that will ever go away. It's just part of my daily thought routine. The thought comes, I dissect it like a frog, marinade it over and over in my mind till I get through it completely - searching for things to reassure me - taking pieces of conversations of other people, doctors, articles I've read, prayers I've said, that others have said for me, scripture, till I get my brain in a more peaceful place. I tell you, it is exhausting. Maybe that's why I'm so tired all the time?

So I've moved my mom up here - well, let me be a little more specific about that - my husband, brother in law, family friend and sister moved my mom out of her house in Phx, then I helped them all move her in up here. It ended up working out with the place down the street from us, and so far it seems to be working out perfectly. I know it was hard for my mom to move out of the house she has been in for 18 years, but having her closer to me up here is making it so much easier for us to help her, and it's so great for my kids and Britt too to have her so close. I'm picking her up tomorrow morning so she can come to Ginger's ballet class with me. Pretty cool I must admit. Pretty cool.

Brittany seems to be adjusting quite well here with us, and she goes and spends 2 days a week with my mom. Something good for all of us.

Madeline is a first grader now, and Ginger starts preschool at the end of the month. So strange. I can't believe I'm going to have both kids in school. I'm going to spend all my time at the gym - get these final 20 lbs off already.

My dr appt is next week - it was supposed to be today, but they had to move it. So I go in on Friday, Dr Nixon will do a physical exam, I'll meet with the team, then go up for infusion. I'll most likely have a scan next month, and we will see where we are. I think I'm handling the 3 Xeloda a day fine, I just have been so tired lately. Yes, this could be a hundred different things, gee - having 2 kids, a new 25 year old special needs niece incorporated in our family dynamic, my mother now moved closer, trying to be the wife and homemaker to my family, and being 42. It's almost not fair - what do women who are in my position who don't have cancer fighting drugs going through their systems on a daily basis feel like in the morning? Do their joints kinda hurt? Are they tired or are they just popping up out of bed with an automatic spring in their step? Do they get night sweats? Oy this frickin early menopause thing just SUCKS! I go through spouts of major hot flashes then not so much. Then I get this like, horrible gas like pains, what is that? What am I like 80??? Do I seriously get motivated to go to Walgreens to buy GasX ? So are these just getting older things or cancer things? I get so mad that I don't know. I recently saw Crazy Stupid Love, which I have to admit wasn't that bad. I do NOT do the romantic comedy thing, if I haven't stated this before, but this wasn't too bad. Anyway, I look at the main couple in this movie, and to be honest, other families, and the moms are able to just focus on their kids, their husbands, their families futures - and me, having cancer, it's like I don't get to do that the same way. There's this dark cloud over me when I go to do this. Is it wrong that I see it that way? How do I see it any differently?

Obviously I've been thinking too much this summer - I remembered as we started this school routine again a couple weeks ago how NOT GOOD I am when I'm not busy. I remember when I was working and single and I'd take some vacation time off, if I wasn't doing something, I'd just go a little nuts. Like my mind wanders to often and too far, if I don't keep in reigned in with some sort of task or event, it goes a little awry. So hopefully the routine will reign me back in.

Something else that has helped me as of late is music. I have always had such a strong connection to it throughout my whole life, and I've found some music that is just speaking to me on a level that has really brought me such deep peace and reassurance. Now, don't judge me here, but it has been the new Mandisa cd, Stronger. I'm telling you, first of all, this woman's voice is probably one of the most beautiful voices I've ever heard - and this particular cd is almost as if she was secretly stalking me for the past 6 months. Amazingly therapeutic. So awesome. I highly recommend it - at least for the title song. Check it out.

Well, off to chat with my hubby. Looking forward to my mom spending some time w/ me and Ginger tomorrow morning. Also, Britt has one of her SNAP dances and she is so proud to be taking my mom as her caregiver. In the end, I know if I just take the focus off of me, and put it on others, all will be right. It is what we are supposed to do - it is why we are here. I think maybe I've just been an emotional 'me-monster' as of late - geeesh D - get over it already. Oy.

God Bless -

The Results Are In

2011-07-15T23:32:00.000-07:00

Well shit. Results came in that the tumor on my liver is growing again. Slowly, but growing. Doc has increased my meds to an additional pill a day. I currently take 1 Xeloda in the morn and one at night, now he wants me taking 3 a day. The interesting thing is, my blood tests are all normal, great actually. My liver function tests are normal - improved actually from my last visit last month. I looked at Dr. Nixon and said "well that doesn't make sense does it?" Dead pan answer of "Nope". Then I replied - "well, I just don't make much sense do I?" Repeated dead pan response - "Nope". I have to say, I know I'll never know, but I wonder what my exposure to all that shit in the air on 9/11 may have played a role here in how my cancer is behaving. I have the most common kind, the kind they know the most about, yet it is not behaving as it does in other people. I looked at him, because quite honestly, I am feeling very realistic and practical about this - not emotional at all - thank GOD - I asked him worst case scenario, when do we pull out the big guns and I go to the Taxol crappy chemo route again. He said "Oh, that wouldn't happen for a long, long time". Good. Glad we have time to find some other alternative. Then he showed me with his hands how large my liver is - it's pretty big! (figuratively speaking here, I'm not bragging like 'whoa! look at my big liver!' I think everyones is basically the same size I just didn't realize how big they all were) then he indicated to me the size of my tumor - again, some relief here.

I'm fine - and again, kinda amazed. I feel fine, all the other tests read that I'm fine - isn't that strange. What a test of my faith - seriously. Now listen to this little gem of an experience:

I go for my massage with chatty Cathy, right? I walk into the massage room and she starts in on the asking me a question but when I answer I basically get interrupted while she talks about herself, you know these people, right? Anyway, she sits down with me and I tell her that I'm really just looking for a shoulder and neck massage as that is where I carry most of my tension. She says, and I shit you not: "you haven't met with your doctors yet, have you?" I'm thinking, you know this lady, everyone is this whole building knows my schedule, that's kinda the cool thing about CTCA. I reply, no. She continues "so you haven't received the results of your CT scan then, right?" Duh - no. She says, "well, I read them and it seems there is something indicated on your spine, did you know this? I want to stay away from this area and just focus on your upper back area". Wha???? I am immediately in panic mode - more spine mets? What? So I just muster a nod, say OK and we move into the massage, which now, I don't even remember. Long story short, she was wrong. Can you believe it? Wrong!!!! I had a feeling that maybe she misread and mistakenly saw scar tissue from where my previous bone mets were as new ones, but wasn't sure. That's exactly what she did. Yes, I did tell my case manager and no, I won't be having a massage again. What a huge, scary moment. What an idiot. Oy.

So it was an exciting day. Once again, I'm really just living off how I feel. I do what they tell me to do - I trust my docs - and I know I am in good hands. And plugging along I go.

Spending some awesome time w/ my mom, and emotional too. I'm looking forward to spending time with her this weekend. What a gift. And I get to just put this aside and carry on. Not in a denial way, but in a I have a life to live kind of way - I mean, I do. Yes, I did hug my Madeline a little longer then normal when I saw her. She has such a peaceful energy, it's healing to just be around her.

Well tired - must sleep. Prayers for healing please, have a great weekend.

God Bless -

Yogurt Ranch Dressing

2011-07-15T12:22:00.000-07:00

So yay for me - 5.4 lbs lost in 9 days. Yay! PJ and I are doing the fat smash diet and detox has taken me over the hump. Feeling great. Tired, but great. I've also gotten the guts up to take some of these classes at the Y - I did a bosu class, which, thank God I only used a step instead of a bosu ball because I think I would have not only hurt myself, but the people who formed the tight knit circle of 20 somethings with tight butts around me. Bastards. Anyway - I'm pretty proud of myself - saying no to carbs though is tough. Didn't realize how much I really really really wanted a cracker. Just one! Bah.

So here I sit once again at CTCA for my monthly 'let's see where we are' check up. I think my mindset on this whole thing is either just adjusting to these appointments or I'm getting thicker skin or I'm trusting God even more or I'm just too busy to worry about it. Probably a combination of all of these things. We did blood work and a CT scan to see what is happening with my liver. Again, praying for status quo. It just seems to me that God has work for me to do on this earth, so with cancer, without cancer, managing my cancer - He's keeping me around for awhile longer to tend to things. My husband, my children, my niece, my mother. Anyone else want to come on board? It's funny, the things you just 'do' - I never realized this was such a window into the souls of people - to see what they are really made up of, ya know? Not the things you intentionally do - to get attention, or accolades, or payment or applause - the things you just do because it's the right thing to do - you don't even have to think about it. When I tune into that piece of me, I feel so close to God - it's amazing. Trust me, I've had the 'doing things for the thank you' moments, tons of them - we all do. But to be honest, those moments never fill me up as much as the blessings. This is just what we do. So whatever the outcome again, I'm ready. I know He's got me on this, whatever it may look like from this perspective - from His? Perfect.

I really feel that we all have something to contribute to this world. Some talent that has been bestowed upon us to share with the world. It's just a matter of finding it, feeling it, then sharing it - in whatever form that may be for any of us. Here I am, on the verge of my 42nd birthday, and I'm not sure what it is. I mean, I have a good idea of the general gift, I just am not sure how to apply it to life yet. How to share it the way I'm supposed to. Maybe I'm thinking too hard about it. I just recently decided I was not going to renew my insurance licenses - now, this may seem silly to you, however, I had been in the insurance industry for 20 years. 20 years!!!! Talk about an industry defining who you are! It totally did - and now? I don't really want to do that again. I mean I did it for a job way back when, then it just turned into a career 20 years later. It did right by me, don't get me wrong, I wouldn't be anywhere close to where I am without this career path, so I am grateful - but now - if I had to choose what I got to do with my life - it would not be insurance. So what do I choose? Being a mommy first and foremost, and the heart and spirit of my family. Leading them into cool places on many levels. Then, I'm not sure. I know I have a big mouth - so that is definitely part of it. And I'm kinda bossy - but in a good way! (bossy people always say that) So I'm sure I'm sure I'll figure it out. We'll just have to see.

So I'm staying here in Phx for the weekend to help pack my mom up to move up to us next month. Came down this am with Britt and Madeline, left Ginger with a sitter then she and daddy get a weekend all to themselves. Looking forward to a weekend with my mom, and help her make this a positive transition, it must be hard, leaving a house you've lived in for 18 years. I can't even imagine. I love her so much, and am so excited to have her closer to me. I can help her so much better.

I'll post results tonight, going to have a massage now before the results. I had no idea they did these here!!! Although the lady who does them for me is quite the talker - I'm going to have to tell her politely to be quiet please. Otherwise I feel compelled to carry on some sort of trivial stupid conversation with her then before I know it, it's all over. I like them here because they have this special 'boob' pillow that has holes for my boobies. Totally great, I'm going to try to fashion one of these for myself so I can lay on my tummy again. Implants are not quite as squishy as my old saggy boobies were. Not that I'm complaining! ;-)

God Bless -

Dina

The Giving is the Gift

2011-07-10T21:45:00.000-07:00

Wow. I hadn't realized how long it had been since I had posted. I think maybe I was in denial a little - ya know? Maybe if I didn't write about what was happening then it really wasn't happening. Wouldn't that be an awesome power? (meaning, if you're having the 'what super power would you want if you could have one' discussion) In any case, a lot has been going on here needless to say. I a nutshell, Brittany is now officially moving into our home, so our family has grown to 5. Funny, PJ and I always wanted a 3rd child, I am constantly reminded how God has a plan all along - so here we are. Next, my mom will not be moving in with us here in my humble abode, as much as I was looking forward to re-enacting the Charlie and The Chocolate Factory bed scene. They found the drug that worked on her blood clots so she is doing much better - although her recent scan has shown her cancer is progressing. Therefore, she has agreed to move up here close to us (down the street actually if the place we found pans out) so that will make it way easier for me to help her, for her to be close to Britt, my kids, blah blah blah. I know this will be a difficult transition for her, but so glad she agreed to make this move.

I didn't think I could ever make the transition emotionally that you make with your parents when they get older - how you switch roles - I didn't think I was ever mature enough I guess - but low and behold, it has happened. I look at this situation as an outsider and think "wow - this is so adult Dina, you are in such an adult situation here". I still feel 33, maybe 34 - is that normal? Is this how our parents felt? Weird.

For me? Well my pneumonia is finally gone - thank you Jesus. And I go in on Friday this week for a CT scan to check out where my tumor growth is. Again, praying for status quo. I'm feeling really great, making exercise and diet a huge priority which I have to say has been my saving grace throughout this whole ordeal. I am a major stress eater, and PJ and I both have made a consorted effort to go in the opposite direction with this. It has given me more strength, purpose, and it also is making me put my health first. One thing that was the hardest thing for me to come to grips with was telling my mom that my family and I were my first priority. That is just NOT what I would have done before cancer. But, clearly being aware of my own mortality, and knowing how essential it is for me and my family that I take care of me mentally, physically and spiritually - this needs to be my first focus. This only helps me tend to others effectively. Wow - that sounds so, 'adult'. Yuk.

Madeline and Ginger are having a great summer - full of gymnastics class, camping, summer movies, swimming - all the things that make summer fun. We won't be able to financially afford NYC this fall as we had anticipated - which is a huge bummer. With what has transpired within the last 3 months, it just doesn't make sense this year. But that is ok - we'll make it there soon enough. I'm a sucker for the Thanksgiving Day Parade - I'm one of those kooks who actually went to it, multiple times when I lived there, and cried like a baby at the Sesame Street float. We will bring my kids there soon enough. Oy do I love that Maria & Louis!!!

I think I've mentally progressed past my disease finally. I'm no longer envious of other moms like I was before, I still get scared, but nothing like I used to. It's more of a fear of how my life will need to change if something medically has to change with me more than anything else. My boobs are finally finished and they look AWESOME!!! I am officially a 38D - and now that I'm losing weight, guess what? Not losing it in my tits first! YES! So frickin awesome. So I bought a swim suit and bras this summer - it's been so great to be on the 'finished' side of this journey.

I'm tackling a huge one now, something I learned today actually about myself. I think I've been living my life, subconsciously of course, like there is this day out there, someday, when I"ll get to just sit and relax and have everything I want. I am not sure if I'm describing this right, but I really think that I've been living like this - or when I was going through the scariest moments of my treatment, mourning the loss of this possibility. What am I really looking for here? What kind of life expectation is this? I guess what I realized today was, just the mere way of being me - everyday - which entails striving to give more than I receive - is exactly what life is all about. Now I'm not talking about this 'live in the moment' or 'life is too short' kind of crap, I get that. What I'm talking about is the actual act of giving to others, that being the gift to yourself. Like I think I thought subconsciously, mostly but not all the time, that my giving would eventually end up in some sort of 'reward' or something. Wha? That's messed up - cuz I totally missed the fullness of my own heart when I just give straight from it. Does that make sense? Well, it has totally enlightened me today, and caused me to get back on the horse here and start writing again, giving again, loving again, from a completely different place. There's no big reward at the end of the tunnel that we keep waiting to achieve with money or things or crap - it's right there inside us all along. We just need to open up. Frickin cool. Hope I explained this right.

Well, I have some amazing pics to post so I have to go sweet talk my hubby into scanning them in so I can post them here tomorrow. I can't believe Madeline starts 1st grade next month, Ginger will be in preschool, and I'm turning 42 in a week. 42. Ya know what? For the first time, so happy to say I'm having a birthday - they mean something totally different now.

God Bless -

Dina

Wire Hanger Shoulders

2011-06-01T21:29:00.000-07:00

This seems to be where I am carrying all my stress as of late. In my shoulders - ever feel like there is a wire hanger strewn through your shoulders? That's exactly how I feel lately. I'm blessed that my cancer is stable - but I do need to keep in mind that it's not gone, it's just not growing. So the attention I need to pay to my own physical and mental well being is essential - but wow - that doesn't mean the world stops while I tend to these things. Wish it did. Wouldn't that be awesome? I would put a huge red button in my minivan - right next to my cell phone compartment - and I could press it when I wanted everything to stop - just stop so I could catch my breath, finish my thought, listen to a song, breathe deeply, or yes, curse out the many idiots that drive around this town that go 10 miles under the speed limit for no apparent reason whatsoever. But no - no button.

PJ and I asked my mom to move up here, in with us. It's not safe for her to be by herself, and it's just the right thing to do. My words came back to me this week - an exchange I had with Madeline last year sometime, where she was given a toy by her Sunday school teacher that they thought was hers - and it wasn't. I made her take it back and she didn't want to - for obvious reasons. I looked at her and said - "the right thing to do is sometimes the hardest thing to do - that's why not many people do the right thing". I have no idea where this came from - but I was blessed to say this - and now, well, I'm trying to do the right thing. I have these visions of our house turning into the house in Charlie and The Chocolate Factory where we live in this tiny little house and we all sleep together in the great big bed. Creepy. But we need to get the clearance from the pulmonologist (sp?) as I don't want the altitude to make her worse - gotta make sure it's safe. Then to boot - PJ's mom is now homeless for some reason and wanted to move in with us as well. WTF?? We don't have a lot here - we have this small 1600 sqft home in Dewey Az - where are we supposed to put all these people? We are fun people, yea, but we aren't THAT fun! Maybe we are - hmmmm. I will try to be less fun. There is WAY too much background to go into about PJ's mom - let me just say that no, we didn't offer, we don't have room - we can't. End of story.

I'm up to my eyeballs in legal paperwork for my mom and for Brittany. I know what to do - just trying to find the time to do it all is my problem of late. On the good side, watching Brittany take flight in some of these fabulous programs up here has been very rewarding. It's like she's finding out who she is - pretty awesome.

I sat with my mom at her dr appt on Tues and she had the guts to ask the scary questions. The 'am I going to die' question and the 'how much time do I have' question. Ironically, he didn't have any answer - which is so true - because as he said 'only the man upstairs knows when it is our time' - refreshing. However, he said that with my mothers type of cancer the survival rate at the time of diagnosis was 12 months - that was 3 years ago - so there you go. I heard this as a good thing, but I'm not sure how my mom heard this information. Surreal. I was trying to tell PJ that I need to distance myself emotionally from this in order to function within this situation. The moment I let myself connect to the 'feeling' my mother is possibly experiencing I completely fall apart - I put myself in her position and I remember, quite vividly that fearful state of mind. If I allow myself to go there and actually feel what she is feeling, I lose myself completely. So I stay focused on just being there for her - not taking over, just being there. Needless to say - I am praying a LOT lately. Well, I pray a lot anyway - my prayers are just more specific as of late.

One cool thing that happened recently is I have been invited to audition to sing with the contemporary band at my church. Now, it has been a LONG time before I felt excited like this about anything. I felt like I used to feel when I would get the part I wanted in a play or musical I auditioned for - just super excited and like a little kid. Now I don't know what will come of this, but I can't tell you how excited I am to just be asked, and to get the opportunity to go sing with people I have the utmost admiration for - pretty frickin cool. I audition tomorrow, so excited.

My pneumonia is 90% gone according to my doctor at CTCA. He gave me a month leash and I'll go back middle of next month for another xray. I've been back on the antibiotics they had me on before, and I am feeling better. Still some tightness in my right side, but better. Had my 3rd and final tattooing done on Tues so we will make sure that heals and then I should be all done with my reconstruction. Yipee!!!! I really love my new boobies. They are super terrific. PJ seems to agree as well ;-)

I've lost 21 lbs now - feeling so frickin awesome and confident. Getting back to exercising now and eating better, making better choices. Feels so good.

That's it for now. Have to share this amazing God moment - I had recently picked up a prayer book for a friend of mine and was flipping through it before I wrapped it up to give to her. I automatically turn to a prayer called 'Hospitality' - and it has this beautiful prayer then related it back to this verse, Romans 12:13: 'When God's people are in need, be ready to help them. Always be eager to practice hospitality.' Sometimes we just need to forge ahead in this life - look ahead and just do it. Just frickin do it. Don't hesitate, don't doubt, don't bitch, don't think 'what if', don't second guess - just do it. This is what we must do.

God Bless -

Learning To Listen

2011-05-20T10:34:00.000-07:00

So here I sit at CTCA awaiting my latest chest xray to see if this pesky pneumonia is finally gone. On the horizon after this? I venture off, barring I am fine, (well, not really) to check into a hotel room for the night because I need to see my mom who I haven't seen since she was released from the hospital on Mothers Day. We need to do some paperwork stuff, bank stuff, blah blah blah. She is now at home, with in home health care visiting her as she is not steady on her feet and is on pain meds so driving is out of the question. She developed additional blot clots in the other leg - so they are monitoring her blood levels as she is obviously on blood thinners. I can't stay at my moms, which is a major bummer, because I have been ademently told by my doctors I need to stay away from cig smoke as it could trigger my pneumonia once again. We have Brittany up with us and I have blessedly been able to get her dental work underway, covering 9 appointments. She seems to be adjusting well, this is all different for her too. I have also blessedly been able to get her involved in some programs for the developmentally disabled and she really seems to be enjoying that. Thank you Jesus for leading me to my community of church and friends - they have all helped me make this happen for Britt - it's pretty cool to watch.

I have to be honest. I have my moments where I am completely and utterly overwhelmed. I feel pulled in every direction, and it when it happens, it's usually around like, 6-7pm - I feel as if I could scream at the top of my lungs for the world to just stop, just stop for a moment and let me catch my breath. Oddly enough, this feeling hasn't happened as often as I would have expected. There is a deep sense of peace within my heart that this is exactly what we are supposed to be doing. My husband and I look at each other and our hearts, as corny as that sounds, are in such agreement on this. I love Brittany, don't get me wrong, but for the longest time she (and I'm going to be brutally honest here) frustrated the hell out of me. See, I knew Brittany before she was diagnosed with brain cancer at age 3 - and she was just as normal as any other little toddler. I think I always thought, or maybe just wished, that she was still that healthy little girl. Radation treatments into a developing 3 year old brain is what has done her the damage she lives with today at 24 - not the brain cancer. Ironic isn't it. In any case, and I have no other explanation for it because this literally has come out of nowhere - when all this crap went down with my mom and I had to swoop in and get Britt, all of that frustration - 20 years of it people - was gone. I see her with new eyes. I see her as this child of God who deserves the same chance in life that any of us deserve. And, what a gift she is to me, my family, my children!! What is this teaching them about loving each other!!! I can only thank God for this - only He would be powerful enough to turn 20 years of anger into humility in an instant for me. It is crazy amazing. Now, onto the guilt. Oooooohhhh I am a guilt MONGER - oy. I am organizing help for my mom down in Phx beacause I just can't be in two places at once, much to my frustration. I've got her covered for another 3 weeks - but after that, I'm not quite sure what is going to happen. I pray she gets strong enough to be on her own again, time will only tell. We all have to work together, including her, to get her stronger and better. We've got a long road ahead of us. I literally am thinking day by day right now. Which is good, but very dangerous as I forget to see what's coming up on my calendar. So look, Dina, look at what's coming up you dork, just DEAL with the now. Oy again.

Now me - I've got to monitor this pneumonia thing so carefully - it is serious, I know this. I have to do my part to take care of me - so when I get tired, I need to try and rest, even if it is for 5 minutes (not kidding - 5 minute power naps are doingme wonders these days). And I can't begin to tell you how much Jesus keeps me in line - again, as dorky as that sounds, He does. Again, my morning shower moments, He spoke to me this week showing me how amazing He is in orchestrating the people in my life to help me handle what is currently on my plate. I can't imagine where I would be in all of this without the people I currently have in my life. I know that my heart would be filled with anger, fear, bitterness, blame, just plain nasty - I can remember that Dina quite vividly - and she has been taken over by a trusting, peacefilled, faith driven person that really just wants to love on people. It is WAY less work and WAY more rewarding to be this Dina - so bring it all on, I am not afraid, I will take on cancer, pneumonia, help my mom through her cancer, be the caregiver to my neice, whatever gets thrown my direction - these are all tests of how I choose to react to them and how much I am willing to trust Him. My mom used to say to me, "Dina, when you get up in the morning, you get to decide what kind of day you are going to have". That's why we were given free will - she's right.

Yesterday was just a pretty awesome day in general. My last MOPS meeting for the year went great - we had sooo much fun it was like a 'mommy playdate' with 50 women. Awesome!!! Then I took Brittany to a function through a group called SNAP where they all met for dinner and a movie. She was so excited. I actually cried when I dropped her off like she was one of my own. Then, I come home and my husband comes up to me and tells me he wanted to read something to me. Now here I am thinking it's going to be some dirty email he just received - but no. He pulls me aside to read to me Proverbs 31:10-31. Have you read this passage?? I never have, and to have my husband read this to me, tears filling his eyes, I can honestly say I have never felt more blessed in my life. What a wonderful gift my husband is to me. Through all this crap - and yes, sometimes it all very much feels like crap - there is light. Ya gotta just look for it. READ THIS PASSAGE IT IS AMAZING!!!

So now I have to go downstairs, see what's cookin with this xray and hopefully get my infusion today. I thank God for my life everyday - in the shower. So now you all know that I am a clean person. And I've decided it can be a much better day in general when I decide to just smile at people. Kinda lightens the load - and any little bit helps in that arena these days.

God Bless -

Prayers answered

2011-05-09T21:21:00.000-07:00

So as I drove down the hill Friday morning, I prayed. I usually do - all the time actually - especially when I'm driving for many things - but this time I prayed specifically for the following: status quo. That's it. I cried as I spoke w/ Jesus in my car with Bonnie Rait playing low in the background - that what I was doing, treatment wise right now - the 2 Xeloda a day and the Arimidex was totally doable for me - I can handle this - please God, please, just let it be working to stop the growth of this tumor on my liver. My liver function is normal, so if we can manage what we have I am totally content with that - I can do this - I am doing this. I was ready though for anything - but anxious, very anxious. See I haven't felt good since the pneumonia, and that was weighing heavily on my heart and allowing fear to take hold. Whenever I don't feel very good I can't help but think the worst eventually. Sorta sucks.

So I get there, and CTCA is having this huge production for 5 year survivors. The whole place is just bursting with energy and decorations and luncheon tables - it was awesome. In any case, got my blood drawn then headed down to imaging for my CT scan. I tell the awesome tech David that I had pneumonia and he starts asking me questions about it during my scan. He asks me 'when did you have pneumonia?' and I'm all 'uh, why?' Duh Dina - the radiologist who reads my scan kinda needs to know this when he is looking at it - what is wrong with me? Anyhoo - I go right to my dr appt and after waiting which seemed like an eternity, my onc comes in and says - 'well, you still have pneumonia'. What?? Seriously? Then he says, I'll be back in a min I need to look at your scan again. Ugh - seriously? I have to admit, part of me was sooooo relieved. I mean, I hadn't felt 100% since I got pneumonia at the beginning of April - but I finished the drugs and even though I still had pain in my right side everyone kept telling me that was normal. In any case, I still have it. Then, as if it was like a secondary, no biggie kind of thing - he comes back in and says - oh, and the tumor on the liver is showing no change. Inside I am like WOO HOO!!!! I Just have pneumonia!!!! WOO HOO!!!!! I never thought I would be excited to just have pneumonia. So now he has me on Ampicillin 4x a day for 10 days then I go back and see him, have a chest xray and have my Zometa since he didn't want to do that until we had this pneumonia under control. I immediately praised God for my answered prayer. This is the first time in a long time I've had news of it not growing, and ya know what? I will take stable. Others have said 'I want it gone!' which, duh, yea so do I - but ya know what? I am perfectly blessed and content with this. What a gift.

My mom however was back in the hospital this past weekend. I'm so emotionally overwhelmed right now with this, I can't even write about it. I've told the story here a couple different ways and have deleted each of them - so I'm going to leave it at this for now until I can figure out how best to express my feelings on this - I think I am in 'task mode' with various arrangements for her and I've got Britt up here tending to some much needed care for her - I have blessedly arranged friends and family to help me as mom transitions into her new home health care life, and I was privileged enough to spend Mothers Day with my mom in the hospital. This is a difficult transition from daughter to caregiver - but this is where we are and I am privileged to love on my mom in this way. I just need to balance it - remember that God has her, not me - I am merely here to do His work. I constantly need to remind myself to not take it on, take it over, fix it - blah blah blah. And keep the guilt at bay - that doesn't help anyone. I can't really write anymore about this right now.

My Mothers day was awesome regardless - my kids and husband showed up for me emotionally in ways I can not explain. They are amazing - and I am so blessed to have my beautiful family. Very tired right now - need to rest. Oh yea - guess I gotta kick this stupid pneumonia - again. Oy - can you believe it?

God Bless -

Pneumonia of the brain.....

2011-05-02T12:06:00.000-07:00

I haven't posted in quite awhile, and I know why. Pneumonia not only did a number on me physically, it did a number on me mentally, and I've been slowly trying to work through this silently on my own. It has really been terrible. I hit my breaking point this past Friday, where I seriously thought I was going crazy. I found myself in our bathroom, pocket door closed, sitting on the floor laying my head on a closed toilet seat just crying. I knew I had to do this for a couple weeks, just cry. I just couldn't fit it into my schedule. Therefore, it came and took me on it's schedule - which was while I was trying frantically to decorate for Ginger's b-day party late fri night for the next day. Pneumonia has shown me my own frailty - because to be honest, I've never felt 'sick' with breast cancer, the drugs I take for it have made me sick, but I never felt 'sick' with it - pneumonia, made me feel very sick. Frighteningly sick. And that was something I haven't ever experienced thus far. Plus dealing with the looks and the comments once people heard that I had pneumonia - geez - that made me even more sick. Like the old person who breaks their hip and everyone gives them the 'well, this is the beginning of the end' kind of look? That's how I felt. Funny thing was, I was fine - super fine - before this came on - and it came on literally overnight for me - so strange. I immediately prayed for healing, knowing that God totally had my back on this, which took a lot of the overall fear away, but the physical pain was something new for me - the difficulty breathing and how scary that felt - this was all new to me, and process. It is probably completely normal for me to go to the 'dark place' and I indeed did. I felt like screaming 'i have pneumonia - big frickin deal! people get this all the time - I didn't get this cuz I have cancer - I got it cuz I got it - simple as that!" Did God give me pneumonia? No - not anymore than God gave me cancer - but He uses this if I will let Him, to teach me - and He has taught me so much, in fact I'm still learning.

And, my mom is not doing real well - I know she faithfully reads my blog, so I have been hesitant to write about this - another reason I haven't posted in awhile. She has just become so weak by not really eating and keeping up her strength and going through chemo herself, that she is now to the point where we need to get her some help in the home. We ended up calling 911 in the middle of Ginger's party because my mom was having trouble breathing. I know my mom felt terrible for this, but I was just glad she got the help she needed, and, it brought us all to a different reality I think. The reality that she needs help now - that's just where we are right now. We are all in the middle of trying to process this, trying to get proper care for Brittany as she needs some care right now, get mom the medical attention she needs, relieve her pain - just try to shift into this new reality. I know I have been having some challenges processing it - I can only imagine what my mother is going through. I think that is what hurts so much, to think how she is battling the frustration of losing control - then trying very hard to keep myself from 'feeling' that right along with her. I do ya know, I'm just like that. Especially with my mom - I can just feel her - so strong. I'm so pissed I am battling this stupid disease when I'm supposed to be the healthy daughter taking care of her mother. That is what I am supposed to do - but I need to be careful, really careful, not to fall into that same trap I used to of disregarding my own needs for others - cuz that could literally kill me if I'm not careful - one thing cancer does love, is stress. So this is a real test for me - a test of faith to be honest. Not only do I have to trust the Lord with my own health, which I will get into in just a moment, I need to trust Him with my mothers. He has my mother in his hands, and just writing that warms my heart and takes all my fear and sadness away. I know He does. If I am so stressed trying to fix everything for my mother, I am not able to hear God telling me what He needs me to do to help her - and that is what I need to be for my mother, helping her, not fixing her. It's like the one thing I've been working on, trusting God more and not trying to take on everything myself, is being put to the test in like the hugest way possible right now. I have moments where I can literally feel my heart beating in my throat - I get so anxious and stressed I can feel it beating in the back of my throat - then other moments where I'm fine and full of faith - then moments when I just completely break down in tears. I'm now making my way through the sea of 'in home care' information, medical alert systems, finding facilities to help my mom live a comfortable pain free life - it's surreal.

I have my appointment tomorrow at CTCA for a scan to see where we are with this current medication regime - and I have to say, I'm nervous. I haven't felt real great - gee - I wonder why. And when you don't feel good, you immediately go into panic mode. I think I used to think I had to convince myself that I was healed in order to be healed - if that makes sense. Like if I kept being afraid of the cancer it would come back and get me - so I had to convince myself otherwise. Well, that obviously didn't pan out. Then I think I figured it out. I think I figured out what the TRUST part really meant. It means I trust Him no matter WHAT the frickin scan says. I trust Him entirely. He has got my back on this - and I am ready for whatever may lie ahead for me - that is where I need to be. Yes, we are supposed to ask and He gives - but sometimes, He doesn't - and we don't know why - we just need to trust He knows what the hell He's doing - and I think He does - know what He's doing. It was like a light went off in my head. What I get from God is the peace and reassurance that He is with me - that is where the trust comes from - and that is where I need to place all of my focus. Again, I base how I feel off me and how I feel in my heart - not any medical opinion, scan or report. Yes, I am nervous about tomorrow, but then I think of Jesus, having my hand in His as we walk through the doors - and know that He's totally got my back in this - no matter what happens.

Something I'm so thankful for was a reminder one Sunday awhile back is to give my life to Him. Every morning - as a reminder for myself, I say this in my prayers. One of the messages delivered by Pastor Jack talked about this - and I totally felt like I was off the hook finally on this one. I mean, I can think back to a time when I was like, 12, where I 'accepted Jesus into my heart' but hellloooo!!! I was 12 - what the hell did I really know about that? I always felt like whenever anyone spoke about this monumental moment I would think back on mine and go 'well, I think I did it cuz it was what I felt I was supposed to do, not what I wanted to do' and always kind of felt guilty about that. To hear it is okay to do this everyday - was a huge spiritual relief to me. It is a reminder to me to do this everyday, which I totally need. In fact, I should probably put this on my daily To Do list - top of the list - give it to Him - next - buy more cheese.

After my appt tomorrow I am off to my mom's to discuss some things about her care, Britts care -etc. I know we can't control when we get to handle things, but man, sometimes I wish we could, right? I mean, it is a constant battle for me to NOT swoop in and take over - but I can't. I just can't. I have my family and girls who need me - I have a responsibility to them to listen to my body and give it a rest when it needs it - to feed it, to take care of it, to listen to it and respond correctly. I am responsible for too much not to. I love my mother so much - and want to be able to help her in a way that doesn't step on her toes, that allows her to keep a sense of self and dignity and independence. I want her at peace with herself, no pain, safe, comfortable and totally connected with God. I will do whatever I am able to make these things happen for her - if she'll let me.

Please keep my mom in your prayers - she is just the most awesome woman going through a huge life transition right now. And I know I need to blog more - I'm sorry for not keeping everyone in the loop about what is happening over here - this past month has been probably one of the most difficult in my life, on so many levels - some of which I'm not even discussing here. I need to remember it helps me immensely to get it out here - in this venue. To get it out of my head and see it here in written form sometimes makes it make way more sense.

I'll write tomorrow to advise of scan results, thank you for your prayers.

God Bless

Dina + Pneumonia = Molasses

2011-04-15T11:21:00.000-07:00

I am totally on the mend, so I am thankful for that. However, this thing will literally stop you in your tracks. Right when I subconsciously try to walk at my normal pace, I get short of breath and need to stop - catch my breath, and start walking again, slowly. Not really easy when you've got an almost 3 year old running ahead of you. Can you believe my precious little Ginger will be 3 on the 30th of this month? Wow. My little miracle child. She is doing great on the meds, and we are just thankful for each day that goes by seizure-free. That is the simplest way for me to think about it - and the safest way for my mind to digest it. Keep it simple stupid. I am doing better, just slow moving. My onc gave me the go ahead to get back on my chemo pills, so I am thankful for that - but my last CBC gave a slightly low platelet count - which could very well have to do with the massive amounts of Advil I've been taking - so I'll knock that down a bit and we'll see where my labs come in next Fri. I've never had an issue with platelets, so this is new information. We'll see how this plays out. Very happy to get back on my pills though - I was off for 2 weeks. yuk. I was very blessed that my MOPS friends totally showed up for me during this time providing meals for me and my family. I know I mentioned it when they did this for me through my initial chemo treatments, but seriously, is this not the best gift? To not have to worry about feeding your family? I mean, being sick comes with it's own set of 'guilt' anyway - the mom kinda holds the the emotional 'reins' if you will for the entire family, and when she goes down, it's like the whole house falls apart. Like everyone's pissed that I'm sick - as if I'm not pissed enough about it - ya know? PJ even said one evening 'I'm just pissed your sick'. Yea, me too. In any case, it was awesome to have the meals, and then my dad and Nancy came and would help with Ginger when I needed to go pick up Madeline from school. My dad even picked her up himself one day from school - what an awesome treat that was for her! She spoke about it all weekend, so frickin cool. So the pain continues in my right side when I take a super deep breath, and I get winded pretty quickly - other than that, I'm, feeling good. Trying to get lots of sleep and drinking tons of green tea and water. I have to look at this as a lesson to slow down, and a blessing that I caught this now, not when I was going through the heavy chemo. That would have really sucked. I have to say though, to my credit - that it took me a week to really get past the bad part - and I think that is pretty good actually. I'm blessed that I'm a healthy person, and can fight this nasty thing - and get better, quickly. I'm looking forward to working back up to my cardio workouts, I know I have to start all over there. But I didn't get this because I have cancer - I got this cuz I got this. Lots of people get pneumonia - I just have never experienced it before and had no idea what I was in for. Now I know, and now I know how to help others who get this thing. It sucks, worse than any other type of cold or flu - this was my comparison the worst. I will be getting my flu and pneumonia shot at my next dr appt. I don't like the 'looks' I get from people who just don't know about the whole cancer thing who hear I have pneumonia and they have that look like 'oh, she has cancer then she got pneumonia, that is bad!' I really feel like I got sick like anyone else would get sick - it happens and it sucks. End of story. Do we have to watch me a little closer than most, yes. But that's cool. I've got some interesting meds going through me - so yes, I require a specific eye. But I ultimately orchestrate this - and I knew when I wasn't getting better in a way that just logically made sense, to go to the dr. Now that I'm coordinating a local doc with my onc at CTCA - I need to purchase a new patience hat and realize there is a learning curve here - which, I am usually not very good at to be honest. But, this has taught me to be a little more - well - patient. We could all use more of that, right? I guess in the end, people on the outside may see this as 'what else is she supposed to handle Lord!!' but I see it as 'this is life and I'll handle this just fine - because you gave me the tools, the friends, the family, the faith to handle it'. Would I rather be doing other things? Hell ya! However, resting - and I mean truly resting - is what this illness called for from me - and I didn't fight it - I was, blessedly, able to rest. Ironic eh? Maybe we all need an ailment that causes us to literally stop in our tracks - catch our breath - rethink - and start walking again - at a completely different pace. God Bless -

Enlightenment from a Laxative

2011-04-04T20:28:00.000-07:00

'The Art Of Happiness Is To Serve All'. This is the clever little quip at the end of my 'Get Regular' natural laxative teabag. Hmmmm. Ironic? Not sure. Found it curious. True - but curious. So there it came and went, the 2 year anniversary of my cancer diagnosis and I am on my way to the dr office because it hurts for me to take in a deep breath and I've had a fever for the past 3 days. I'm getting a little tired of the irony surrounding this April Fools Day - and this used to be a day I kind of enjoyed - not so much anymore. Diagnosis? Pneumonia. No congestion at all, just some pain when I take in a breath and this fever. My doc is baffled. Puts me on these mega antibiotics called Levaquin which are just that - mega strong. Within a day the fever is gone - great! And to be honest, although the Levaquin makes me feel a little strange, it is making me feel better. So I am full of hope. My CBC was normal, white blood cell counts normal - again, nothing looks the way it is supposed to look when someone has pneumonia. Of course not, it's me. I convince myself that I got it from showering at the YMCA (my first and last experience doing that) and remind myself that lots of people get this, not just me. I try to stop kicking myself for being the only one in my family that did not get a flu or pneumonia shot - and swear I will do this as soon as the doc says it's ok. Then last night came along. I was feeling fine - great actually - and got into bed. Tossed and turned all night, being awakened by stabbing random pains in my side. I get up and move myself into the recliner - at least I can sit up. Then at 6am I wake myself up by hearing a fried egg cracking sound as I breathe in - I've been breathing for who knows how long with my mouth open, and this sound just gives me a visual that turns my stomach and to be honest, makes me panic. I mean it sounded like my lungs were cooking. Totally creepy and frightening. Again, no congestion, no coughing, ever. I get up and take a breath in and the pain forms a horseshoe from the front of my shoulder around my underarm to the back of my shoulder. I need to go to the hospital. I go to the hospital - by myself because PJ needs to watch the girls - and check in. They do all their prep work and elect to get me a CT scan - plus blood work - again. CBC is again normal, emergency doc is baffled, he says he wants to check for a possible blood clot in my lung, thus the CT scan. Cool. They give me some liquid form of ibuprofen and a pain med which was AWESOME and get me in for the scan. Scan did not reveal any clot - thank you Jesus. However, and my memory of this conversation is a little fuzzy because of the pain meds, the emergency doc said that we continue on the heavy antibiotics, make sure I combine it with advil and pain meds because he wants me to be able to breathe deeply so I can eventually get this crap up and out of my lungs, that it is in both lungs, and that the radiologist speculated on his report that within the infected portion of my lungs it possibly showed some nodules reflective of metastatic disease. Huh? He says they can't be sure of this until the pneumonia is cleared up, and the chance of this is like, 5% but he recommends to do another CT scan once we get this kicked. Ironically my next CT scan is booked for May 6th out at CTCA. Now, WTF? So here I've been convincing myself that getting pneumonia is normal - but this - this information - where do I put this? Ya know, I didn't even tell this to PJ or anyone because I can't really recall the conversation with the doctor - I was out of it but kinda in the 'coming out of it' stage. So I think this is what I heard, the general idea is right. Plus, I know when PJ hears this he will be like "Call him back and ask him! Call him back and see exactly what he said!" Ya know what, not real sure if I want to right now. Not sure. And obviously neither is he. I don't really know what to do. I mean, yes, I need to kick this pneumonia, and I will. I just really need to slow everything down and take my meds and rest. That will be hard but totally doable. I can do this. I will have to try to put this information on the back burner till then - but how the hell do I put THIS on the back burner? I'll admit it, part of me doesn't really want to know. At all. But then the logical part of me says to me 'Dina, not knowing would be worse than knowing - your imagination is far too frickin wild to let it just run with this thing'. True. Maybe I'll call CTCA tomorrow and let them know what they said, and let them decide what to do. My last CT was in Jan and that didn't show anything. It's not like it grows like wildfire. And this ER - though very nice - has misdiagnosed me and my family before - this was where the 'febrile seizure' diag began with Ginger and was debunked. They actually diag her with pneumonia too which the pediatrician looked at and said 'huh?' - so who knows. But there it sits - right there in the back of my brain - to fester and fuck with me. Oy. I was reminded while taking a very hot shower today of the article I read in the Cancer Fighters magazine (which is amazing) the last time I went to CTCA - I spoke about it in my last post but didn't really get the meaningful point across. This man with Lymphoma said something like 'today - I can control what I do and experience today. Tomorrow, next week, next year - who knows? I have no control over that - but right now - I got this.' or something to that effect. I can digest that way easier than 'soak in every moment'. Sometimes I feel like I have to sit there and look like I'm pooping while I try to 'soak' in the moment. It shouldn't be forced like that - but feeling a sense of control of my choices, my actions, my thoughts, my prayers. Being intentional. I can do that. So that's what I'm working towards. I don't know what this scan really showed, and this doc didn't pic up the phone and call my onc or anything - and he discharged me too. So, although it sounds bad, it can't be that bad. To me. I am going to decide that it's not. How bout that. Madeline asked me last night while sitting on my lap if, once I feel better, if I could invite her great grandma's over to our house for a visit. And we sat and talked about each of them, I then had to explain to her that they had all died. She looked so sad. Then I said to her - but you'll get to meet them in heaven! We'll all be in Heaven together one day! She said "I wonder what it looks like there mom?" Then she looked at me with these huge excited eyes - she said "and Jesus is going to be there! I'll get to meet Him! It's going to be so great!" and I said "Yes He Is!! It will be!!!" This is what I believe. Will it be what she believes as she grows older and makes her own decisions? I hope so - but for now, it is really cool to watch this through her eyes. She gives me a whole different perspective. So here I move forward on my week, medically battling this nasty bug - and trying to keep my mind from wandering too far. Ya know - whatever it is, it is. I'll handle it and fight and take it. I'm ready. After I get a frickin flu and pneumonia shot - idiot. God Bless -

Areola Mug Shot Book

2011-03-26T21:28:00.000-07:00

Well the above indeed does not exist - as much as I wanted it to. You should have seen the face of the woman who does the tattooing for Dr. Mo's breast cancer patients when I asked her if she had one for me to flip through - looking for stars, cowboy hats, something original. Had to tell her that yes, I was kidding. Oy. But they are looking great - had my second tattooing done on Tues and all is going well. May need to do one more as the ink tends to not take as well on scar tissue (who knew?) so we will see. It's really up to me - so we'll see how these heal up and what the final look turns out to be. I've lost - drum roll please - 13 pounds so far and am feeling really really great. Wish I could exercise more, but trying to balance that with time at home and with my kids - and like most moms of little ones, just trying to balance everything. I just wish there were a couple more hours in the day. My sister came to visit my mom and then spent a couple days up here with me and it was really nice. Much like my two little girls, my sister and I are polar opposites of each other, and I hadn't seen her since Ginger was born - so this visit was almost like experiencing something that was familiar but as a totally different person. Not that it is about me, but her coming here and being at my moms place with her gave me an internal sigh of relief - like I didn't have to carry around that worry for my mom for a couple days - which made me realize that I was actually doing this. I didn't realize how much worry I was carrying around with me. I'm not sure what happened during my spring break - maybe it was experiencing the difference between my sister and myself on this new level, but I have obtained such a huge sense of peace for my mom, and have been able to let go of my need to feel responsible for what she is going through. I don't know if I can explain this correctly - but I am the kind of person who literally feels what others feel the moment they walk into a room. This as I've mentioned before, is something I really like about myself. However, what I have realized is 'feeling' sometimes turns into 'owning' and that, is not healthy. Now, my sister on the other end, is not like this at all. She is completely separate from others, doesn't engage at all - whether this is a conscious choice, a defense mechanism, just the way she is wired - not sure. In any case, I realized that I need to find a happy medium, at least where my mom is concerned. Or at least, I can 'feel' to empathize and feel compassion for, however, these 'feelings' are not mine to own and manage. The one who owns them are responsible for owning and managing them. What a concept, eh? It makes sense I would fall into this trap, I mean, when you feel like shit, you want to fix it, right? In any case, this was a huge realization for me - and I feel like I have opened yet another door to a greater understanding of who God created me to be - never ending adventure. Ginger has been handling her meds ok - I need to get her up to 2ml in the am and 2ml in the evening - so far I'm at 1 and 2 - so we're almost there. I am taking her in to see her neurologist on Mon afternoon - I want him to see her again and talk to him face to face about this. The second opinion I'm getting is scheduled for May. I thought I was hovering before, but wow, am I hovering now. I looked at PJ earlier this week and said 'am I one of those people? those people who just seem to invite bad shit into their lives?' I know you know who I'm talking about - the people who unfortunately just need drama to have something to talk about, to bitch about and it just seems to always get worse and worse and worse - am I one of those people? I really thought I was a positive, glass is half full kind of person. But then I look at the pile being put on my life plate and I feel the need to review what the hell I'm doing - ya know? My loving husband gave me the roll of the eyes and the annoyed tone while he answered 'no dina, you're not one of those people'. Which I appreciate - but still. Had my appt at CTCA yesterday and all went well. I'm handling the current meds just fine, and he gave me a 4 week leash then we'll do another scan. So that CT scan will happen on 4.29 and we'll see how the current meds are working. I read an article about how cancer makes you feel like you have lost control - and a way to get that feeling back is to realize that while we can't always control the information coming at us, we can control the way we react to it. I'm sure this has been said to me before, but I heard it differently this time. I mean, the emotional roller coaster of this disease for me is crazy, to think I can regain some of my control back is attractive to me. It will take some focus and intentionality from me - but wouldn't it from everyone? I mean, not only about cancer - but just life in general? I think this is another reason why God gave us free will - shitty things are going to happen, they have to, but we get to decide if we're going to bitch and moan, or look at it and say - what am I suppose to see here? What am I suppose to learn? Sucks sometimes, and I think we need that time to say so, but then we must take the next step. Well, I must. OH - and in the same article, a cancer survivor was talking about how she didn't want cancer to define her. Now, I've talked about this before, but something she said made it a little more tangible to me - she said that when people asked her about herself, cancer was like, 4th on the list. So I thought about this for myself - and thought about what I would say if someone came up to me and said 'tell me about yourself'. Cancer wasn't even in my answer. As much as this is teaching me, I'm not letting it define me to others. Pretty cool. God Bless -

Clarity Comes in the Shower

2011-03-12T20:02:00.000-08:00

I'm not sure why but this is so true for me. Maybe it's because God knows that this is the only time I am ever truly alone - well - when Ginger doesn't realize I'm showering because lately if she does, she is in the shower with me - but usually, this is where I am really able to hear God speak to me - as corny as that sounds. In the shower.

So my week this week was one of those chaotic mom weeks - which - I secretly love. I think if I didn't have cancer I would be complaining about having to be so many places and be stressed and blah blah blah - bitch bitch bitch - but I suppose the moment I start to feel 'stressed' by being a busy mom of two - I am very quickly reminded of how blessed I am to even be a busy mother of two - and it immediately calms my soul. Doesn't take away the tired and natural stress, but it certainly is my new 'perspective of living, and I am so grateful to have this perspective. It thrusts me into each moment of my life so fully - it is amazing.

Ginger had yet another seizure yesterday - and that has thrown me for a loop. This one was much longer and much different than the others before, and for those who don't know - the last one she had in Phx just a couple weeks ago resulted in a phone call from her neurologist to me who simply called in a medication called Depacote - which after reading up on I decided NOT to give her and pursue another opinion. I assumed that since her seizures were coming 2 months apart I had time to get this done, but obviously, I was wrong. This seizure again included her vomiting, thankfully she did not aspirate this time, but this one appeared much more 'epileptic' in nature - although she has never been diagnosed with this. I called 911 because it was lasting about 5 minutes - which seemed like an eternity. When the fire dept arrived she was just coming out of it - and after describing it to them, the pretty much asked me 'do you want to ride with us in the ambulance or will you meet us at the hospital?" We spent 5 hours in the hospital and of course, all tests came back normal. They did speak to her neurologist and administered her first dose of anti-seizure medication there at the hospital. They said that even if we didn't want THIS medication, to give it for now until I meet w/ her docs to discuss which med is appropriate. The med they prescribed is Keppra - and when the emergency room doc came in and said to me "I just got off the phone with the 'on call' doc for your neurologist office and he recommended Keppra instead of Depacote" I had the overwhelming feeling that this was exactly the reason we were where we were - to get this different medication. I have very mixed emotions about this - and I have been 'reliving' this seizure for the past 24 hours - it was just me at home with Ginger, Madeline, and a little friend of Madeline's who had come over to spend the night. I know Gods hand was on Ginger and I - it is not by coincidence that I just happen to always be with her when these happen - she has had 7 of these now - and I've been right there for each one of them. When I was on the phone with the 911 operator I had to lay her down on the floor on her side and I laid on my side right in front of her and just kept talking to her. She was fixated on looking up, eyes dilated, and she was trying to form the word 'mom' and she grabbed the back of my neck and just began pulling me into her over and over and over. It was so scary.

So back to my shower clarity - I'm showering last night after we were home, settled and had everyone in bed and I realized that I've been focusing on the wrong thing. I've been obsessed with the 'why'. And from what I've read, we may never know why. Ever. I think I have been subconsciously thinking someone would tell me that it was food, or stimulation, or something that I could fix then they would stop. I need to just embrace what is happening, which is the fact that my Ginger has seizures, and learn about them and treat them. I'm starting to change my way of thinking, and reading a fabulous book called 'Seizures and Epilepsy in Childhood - A Guide' which is simply amazing. I am starting to feel so empowered. A new direction for me to embrace this situation. Deep breath.

I'd be lying if this hadn't made me more adamant about getting better myself. These precious children need their mommy - and my little Ginger needs her mommy to beat this frickin cancer and take care of her. God and I have had some heated discussions about how he chose me, me to be their mommy - and not that anyone else doesn't deserve to raise their own children, but that I feel so deeply, so incredibly deeply, that I need to be here to help my children through this life. Ginger needs her mommy - and I will do whatever it takes to make sure that happens.

So far so good on the meds. She takes a dose in the morning, and another in the evening. Since I do the same, I tell Ginger and she gets to take her medicine with mommy - so that seems to be going fine. I haven't seen any major side effects so far from Ginger. I am praying that this is the answer. I think I will continue to seek another opinion - even though I can't get into see him until May - and maybe someone local. Trying to tune into that gut feeling, which is so clouded by confusion and fear right now - just trying to work through that and be still.

My sister arrives this evening from MA and my mother is so thrilled for her to arrive. She'll stay with my mom for a couple days then I will go down and get her and bring her up here. I haven't seen her since Ginger was born, so I am so looking forward to just spending time with her. And it is so great for my mom to spend time w/ her too - I know she has missed her so much. My mom and Brit used to travel to Cape every summer but obviously have not been able to do that for the last couple of years.

I continue to pray for the reminder that I cannot control these things. That the decisions I make, if tuned into the Lord, are the things He uses to bring me closer to Him, but when we are so afraid, we often do not hear this and are driven by our own need for 'answers'. He reminded me recently of when I was originally diagnosed, and how long I was obsessed with the 'why'. That was just a huge waste of time - I had to focus on getting better. So now, with my little Ginger, I need to let go of the 'why' and focus on getting her better. Might not be what I would choose, but this is the stuff You use.

God Bless -

Real Life Prayer Chain

2011-03-07T21:08:00.001-08:00

My recent appt at CTCA went fine actually - my blood counts were normal, of course, I've lost 9 lbs which everyone is thrilled about, including me - isn't it ironic that the normal emaciated side effect of cancer and going through therapy is quite the opposite with breast cancer - breast cancer treatment actually makes you gain weight - something I found challenging before cancer anyway - but I am finally feeling like I am taking control of this part of my physical self. I am exercising and eating better and making better choices and it is making a HUGE difference in how I feel. I feel really great. My onc doesn't want to talk scans till the end of the month - he wants to give this medication combination a chance to work, at least 8 weeks. So I feel like I have this regime under control - the chemo pills are fine and the aromatase inhibitor is fine - I'm really handling these drugs very well. The side effects of both of these drugs I felt when I was on them before are no where to be seen - at least for now - so I feel like I've been given this longer leash and that feels pretty good. I enjoy these 'between scans' times rather than loathe them - I figure I've got this awesome stretch of time to enjoy my family, feel great, grow out my hair, and live each day - who knows what next month will bring, for any of us really, right?

My mom is doing better - and Ginger is be bopping along - you'd never know anything was ever wrong with her. I've been trying to get a second opinion scheduled for her but have yet to be successful in playing the telephone tag game. Frustrating.

So - without going into details cuz it's really just not worth it - we changed home churches about a month or so ago - it was a difficult heart wrenching decision for our family, but we needed to make this change. So, I'm sitting in service this past Sunday and after listening to the message, I go up to receive communion and then, without even being consciously aware I head to the prayer area, kneel in front of the cross and begin to pray for my mom and Ginger. I am quietly knelt there when I feel a hand on my shoulder, another on my back, then another on my arm. I then hear people praying over me - praying that God restore me to the original form in which He created me in my mothers womb - that this cancer was not of Him, and to restore me to my original form. I am brought to tears by this image, and suddenly I have this image enter into my mind of this chain of souls - a chain of souls reaching to heaven, all holding hands. This is what it is all about isn't it? I'm knelt praying for my child and mother, while others are behind me praying for me, while others are subconsciously behind them praying for them, and so on. I was filled with such peace, and the image of being 'restored to my original form' was extremely powerful for me to envision. It was an amazing experience.

So the tattooing went well - I was all ready to pick out my areola but it was much more uneventful than I had anticipated. She literally had a stencil - like the plastic ones we had in grade school - a stencil of circles that she just picked one out and drew a circle around each one then went ahead and got started. It did hurt on one side more than the other - but it didn't hurt where she was tattooing, it hurt in other areas of my breast, if that makes any sense. It was really strange. Took about an hour. They are totally healed now, but I go back in again in a couple weeks to have them done one more time as they tend to fade. So I'll get another 'coat' and some 'shading' at my next appt and then I think it is all done. I've been going to see Dr. Mosharaffa for almost 2 years now, I feel like i need to give him a plant or something. Wow. What will my calendar look like without a trip on it down to see him? Well, he's definitely going to make my Christmas card list, that's for sure. I'll post pics when they are all done and pretty. I have to admit, I really like them.

So I had mentioned in my last post the old saying 'God won't give you any more than you can handle' and how I think that is basically just a big crock of shit. Well, a good friend of mine had a comment on this that I feel the need to share here - because it really puts this stupid phrase in perspective, and allows me to start the movement to simply abolish this stupid saying right here and now. Patti - I am quoting you directly and I hope you don't mind cuz you are just frickin awesome - here goes:

"And as to that old favorite quote about not giving us more than we can handle, well that's just a crock. I don't know whose bright idea it was, but they obviously hadn't walked in your shoes. More to the point, I think, is that somehow we do manage what is handed to us, but sometimes it is very, very hard and it certainly takes its toll. That is a far cry from the cavalier idea of God just blithely handing out difficulties that we somehow manage to push through. Again, I just don't think that is the way God operates. I think that it is by God's grace that we manage, not by God's piling on to see how much we can take. Maybe it all comes down to semantics, but I think it bears looking at because, as you point out, so many people put so much store in that idea."

Brilliant. I'm so lucky that I get to chat and be around such awesomely smart people. What a gift - I wish I could share every one's

Off to bed with me now - trying to get more sleep but I always think I'm going to miss something if I go to bed early - why do I do that? Is Celebrity Rehab REALLY that important?

God Bless

Stop The World I Want To Get Off

2011-02-21T06:41:00.000-08:00

So my last post was lengthy, and was quite awhile ago. I got my head screwed on straight after that last CTCA appt - and have been actually in a really good place mentally and spiritually about my treatment and such. I noticed that my medical staff wasn't 'freaked out' like I was, and we ended up chatting for quite some time about me, my treatment and what they felt would work. It made me realize that if they aren't freaking out, why should I be? But then almost immediately I realized - wait - why are you looking to THEM as your gage, you should be looking UP for that comfort, and that is available always, if I just look up. Drats. I keep forgetting to let Him - dang it. Trust. Trust. Trust.

So then my mom goes into the hospital this last week with a blood clot in her leg. She was in for 2 days and released late this past Thurs. I find this constant struggle of feeling the need to be by her side at all times, and be the mom and wife to my own family. I know we only live 80+ miles away, but this past week it has felt like an eternity away. Blessedly I have been able to help coordinate friends and family to assist with her care, but I wish it could be me all the time. I was able to spend all day Wed with her - and I sat there, watching her while she dozed on and off, I could feel her inner struggle. I sat there and could feel it as if it were my own - and I wanted so desperately to take it away from her. She is so frail, so weak - I can see in her eyes the doubt if she has the strength to do what is necessary to get better. I know this look - but I know this from a completely different perspective, and a perspective from about 32 years younger. My mom was always the one who held everyone together - the one who stepped in to raise her first special needs granddaughter when no one else would step up to the plate - the one who grabbed hold of the word 'independence' when she suddenly found herself divorced in the early 80's and ran a marathon with it - she was key in how I perceived myself as a woman, and independent, self-sufficient woman. She's tired - and I can't really blame her. I don't know how to be there for her - maybe I need to just ask her. She is getting a second opinion with another oncologist which is a blessing - the idiot doc she had paid no attention to her complaints that her leg was hurting when she was in - perhaps if he had just looked at her leg, she wouldn't have been in such dire straights this past week. Jerk.

So we are there in Phx with her on Sat along with my aunt and cousin who came in from CA to help (thank you Jesus) and Ginger has another seizure. This one was different, and she actually stopped breathing and started turning blue, so we called 911 this time. Is this supposed to be a sign that I'm not paying enough attention to my family? Because if it is - please lay off my kid!! This seizure was more drawn out - she is more developed now so she is now somewhat aware of what is going on and trying to communicate that to me - it was so frickin scary. I am holding her, she is throwing up, but in a 'passed out' kind of state - it's kind of flowing out of her mouth and nose - not projectory - then I hear PJ's voice say 'dina, she's turning blue you've got to get her to start breathing' and I did what you are sooooo not supposed to do - I turned her around and kind of sat her on my lap with my arm around her mid section and stuck my finger down her throat - I thought maybe she had vomit in her throat. I felt her react to this and I think this kind of shocked her into breathing again, because the color quickly came back to her face, but then she clamped down on the tip of my finger - seizing - and would not let up. I can't even explain this pain, but I totally get why we as women are so much better at tolerating this. I was sitting there thinking 'wow - this REALLY hurts - but she's breathing and I'll get my finger out of here eventually' and the pain just went away. We tried to pry her jaw open and that wasn't working, then I just spoke to her in a calm voice ' Gingy hun, let go of mommy's finger please, open your mouth' and she let up a bit. Then I just held her and the fire dept got there. She started coming around and was responding, slowly, but responding. They checked her temp, her blood sugar, her blood pressure, everything - normal. Nothing out of the ordinary. So frickin frustrating. When this one started we were on the floor in the bedroom getting ready to play a board game - she sat down on her knees to join the game then sat up and put her hand to her throat and looked at me. I thought she swallowed a game piece at first, asking her what was wrong and patting her on the back - then I watched her expression change to that of the familiar, seizure type of face. Where she just checks out - although this time she slowly transitioned to this, it wasn't as fast as it has been.

We didn't go to the hospital. We knew what would happen as we've done that before. They would have put her through a barrage of tests again only to tell us they found nothing and we just couldn't put any of us through all of that again. We just wanted to go home. So as we traveled up the hill back to Dewey that night, I sat in the back of the van holding her all the way home. The moon was full and bright - I could see it through the back window and the winter storm was at a calm point as we drove home. I held her - and just cried in the backseat - looking up to the sky cursing this God I love so much. Enough already - seriously. And if one more person tells me that 'God won't give you anymore than you can handle' I think I'll just kick them in the crotch. I am at a loss as to where my emotions are to be directed - I feel like I'm being pulled in a million different directions - like I don't know where I'm supposed to be focusing my attention. Like I need to be in 3 different places at once - and I just can't. And all 3 places are really important. Oh yea, and I'm dealing with these new chemo pills and I'm not feeling really great. Maybe it's because of everything else going on, maybe it's because I'm fighting this head and chest thing my family had for a week - maybe maybe maybe. I just feel like crying. I want to fix everything, and I can't. I just can't. I want my mom to be better. I want to figure out what is wrong with my Ginger. I want these pills I'm taking to kill the cancer inside of me. I want I want I want. I know that the Word says we will receive what we ask for if we just ask - however, we get things in His time - not ours. Perhaps I can find some comfort in that. But I need to keep moving forward. I can't tell you how much I just want to crawl into bed, pull the sheets over my head and sleep - for days. Actually, some people do this - I know, I cannot.

I was supposed to be in Phx today again to check on my mom and get a meal list to her to follow and take Madeline to a pediatric urologist to review her tests she had done a couple months ago - but today I woke up feeling sick. Great. So we all stay home today, and I head down to Phx tomorrow for my tattooing. Then Phx again on Fri for my CTCA appt - just labs and my calcium infusion. I can't believe how much I am driving. Gas prices are killing us - I'm adding to my list of prayers the price of gas to go down. Oy.

I hate to be all BLAH in this post - I am usually able to write myself into a better state of mind, but I'm finding this challenging today.

My hubby and I celebrated 6 years last weekend - the 12th. It was so cool - Madeline asked me if she could see pictures of us getting married and so I pulled out the pics and the video which PJ and I had never watched (shame on us) and after dinner we all gathered on mom and dads bed w/ popcorn in hand and watched our wedding video. It was pretty cool. For those who don't know, PJ and I got married in Vegas - at the Hilton on the Star Trek Experience ride. Yes, we were married on the USS Enterprise. It was pretty frickin cool. We hired someone dressed as a Borg and a Klingon as our witnesses and made anyone who came wear Spock ears. Hilarious. It was pretty cool to relive that I must say. I wonder how long it will take Madeline to realize I was 8 weeks pregnant with her when we got married. We kinda decided to have a baby together before we decided to get married. Oops.

I'll try to be more diligent about posting - I need this so much. It helps unclutter my brain. Plus this tattooing will be an interesting experience. I wonder if they have a book of areolas for me to thumb through to pick out - like 'areola mug shots' kind of thing. Maybe I should have them start shaped - that would be kinda cool - hmmmm. Can't wait to see the look on her face when I ask for this - I love it.

God Bless -

We'll Figure It Out

2011-02-09T11:08:00.000-08:00

I have been cooped up with the girls with the coughing crap all last week, then PJ got it at the tail end of the week through the weekend - now, I can feel myself fighting it too. I was making up the bed in the spare bedroom one morning last week when the words above just came into my head, seemingly out of nowhere. I said it out loud to myself "we'll figure it out" and suddenly a sense of peace came over me. Don't get me wrong, I know how this looks - it looks bad. And if I forget that it looks bad? All I have to do is be around someone close to me and I am reminded - simply by the looks on their faces - like people are losing hope. I'm not being a bitch here, seriously, but I think this has gotten to a point where people have run out of things to say - or they are afraid to say anything hopeful because it has been such a shitty road thus far. I don't blame them - I would probably be the same way. However, I - ironically enough - am full of hope. Not all the time, I am human, but most of the time, I really am. I look at what I have going for me - I feel fantastic, a normal liver function test, healing bones, no recurrence anywhere else - it's just this pesky liver tumor we gotta figure out how to manage. I have had many conversations with myself and the man upstairs and know, that ultimately, He and I are in this together, and it doesn't really matter what others think, say, look like when then see me, etc. Do I want someone to tell me everything is going to be fine? You bet your ass I do! Every frickin day! So I tell myself this, everyday. I wake up in the morning, sore - from Erin's class at the Y - thank you - but ready to face the day with my beautiful children and make this life the best I can. I am constantly reassuring myself - which, oddly enough ends up me reassuring other people too. Funny.

However, when I start feeling that fear - I try to just say to myself, 'turn this fear into faith Dina - do it!' and it does work. It really takes some effort, but it is working. I need to stop myself from getting all pissed and sad and upset and jealous of others who don't have to go through this - I have been doing this a lot lately and I need to just stop. It doesn't change anything, except my mood from pretty OK to pretty depressed - and what fun is that? When this happens, I try to remember to remind myself that this is what I have - like it or not - this is what I have - I get to choose how I react to it. Do I stay all pissed and sad and angry about it? Cuz that's easy - I can do that all day long, probably while I'm sleeping. I keep trying to turn this around on hope. Hope. Trust. Hope. I'm not afraid to say it's going to be alright. I say it to myself all the time.

So I'm feeling all this crap up there in that paragraph above, and my mind just races like this all the time because, well, I spend a LOT of time in the car. Anyway, I get here to CTCA today for my bone scan and to meet w/ my onc and I am in the waiting room, and I pull up my email on my phone (this is where PJ gets pissed cuz I'm not supposed to use this data function on our plan) and here's the devotion for today. OK - I have to just post it here, sorry for the long read:

… and she lives happily ever after.
9 Feb 2011
Glynnis Whitwer
"... your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."Psalm 139:1(NIV)

I recently finished a bestselling novel. It was over 1,000pages, epic in size and story, and consumed me for weeks. A respected acquaintance recommended it, and once committed, I stuck with it to the end ... in spite of wanting to quit, often.

By the end of the first chapter, I realized it wasn't going to be an easy read. The story was set in the middle ages, with uncomfortably real sections. Perhaps I'm a bit sheltered, but it seemed to contain unnecessarily graphic descriptions. Skimming over the uncomfortable spots, I kept reading.
The book ended well, but there were times when I was ready to close the cover, and move on to something happier. The antagonists were just too mean. The plot too painful. The abuse, greed and vindictiveness too ugly to dwell on.
If that book ended badly, I would have been disgruntled at spending weeks of my life on it. On the other hand, I would have been frustrated to quit before finishing. Here's why.

If I had quit reading at page 245,the story would have seemed hopeless. I might have thought the villains won, or the hero and heroine never reconnected. If I had read a bit further, to say page 576, the story would have ended with justice as an impossible dream, and hatred and revenge as unavoidable and all-consuming parts of life.But now,after reading the book in its entirety, I can see the amazing story. The plot progressed steadily; there was tension, conflict and eventually resolution. Good did triumph, although not without many bumps along the way.

It got me thinking that our lives are a bit like that. For those of us who have accepted Christ, we will have a happy ending in heaven with God. One way or another, our story will end well. But not every page or chapter in our story is happy.

Today might be page 452 for me. And on page 452 there is conflict and tension. Last year might have been chapter nine. And in chapter nine, the protagonists struggle financially, and wonder why God allowed such pain into their lives. If I only read one page or chapter, I would have a very different view of the story.

Yet the Author of my story has a purpose for every page and chapter in my life. He’s got a story in mind and is building and developing the plot every day. No story is conflict-free. No story is complete without a challenge. Victory is empty without a struggle.

Today, I’m considering my life as a grand story. Good will triumph. The victory will be sweeter because of the struggle. Today is not the story. It’s just page 452. So I will press on, trusting in a loving and creative Author to bring about resolution. You see, I already know the ending – she lives happily ever after.

Dear Lord, I praise You for Your creative and all-powerful nature. In light of the difficulties I'm facing today, I choose to trust You, believing You are writing an epic story in my life. Help me to press on when I want to give up. In Jesus' Name, Amen.

It's quite a trust issue to just know that you already live 'happily ever after'. But it also reinforces the fact that we have one shot on this earth - one. That's it. The most perfect part of this prayer for me is 'in light of the difficulties I'm facing today, I choose to trust You'. That is HUGE! I will press on, and I won't give up. Not by a long shot. This is a time in this disease where I feel two completely opposite things at the same time. I feel the most alone I have ever felt, yet the most loved by the Lord. Quite a dichotomy.

I was getting my blood drawn just a bit ago, and here comes another thought seemingly out of nowhere. The thought was 'they are here to help you'. Now as stupid as this sounds, I really think I needed to hear this because I think I have subconsciously thought that these people with their normal cancer free lives where the bad guys - they were the ones always delivering the bad news, right? I need to remember that they have dedicated their lives to helping others. I think, once again subconsciously, that I still hang onto that 'in charge' person and that I'm supposed to be the one to take care of others and these people really are just here because it's their job not because they actually want to HELP me - I am wrong. So - I will open my eyes again at these people, and choose to have them viewed with hope filled eyes. I wasn't even aware I was doing this, but I think I was. Bringing this negativity into these appointments. Not on a huge level, I always am making everyone laugh around here, but on a deeper level, inside of me.

I'm going to go get something to munch on before my appt in an hour or so. I have a list of questions to ask the onc and the naturopath and the dietician. We'll figure it out.

God Bless

At Least I'm Earning my Disability

2011-02-01T18:55:00.000-08:00

Well, I was feeling kinda guilty for receiving my disability payments recently cause I was feeling so good - at least this scan has wiped that guilt away. Unfortunately, I've been having those stupid, annoying dark thoughts - which I now realize I do this every time this journey takes these types of turns. Thoughts of dying, of not being around to raise my children, to thinking of my husband meeting and loving another woman, and that woman raising my kids and them calling her mommy, of my husband making love to her - this is some f()*cked up shit - right? Shit - I can't even type this without crying about it. This is probably the most painful, heart wrenching part of this journey, is how my mind goes to these places - and I just cry - cry so hard, so deeply, so A F R A I D. I tell these things to my husband, which is probably really unfair - I mean, I'm expecting him to say 'Dina - that's not going to happen' or 'Dina, I could never love another woman' or 'Dina - you are the only mommy these children will ever know'. These are the things I WANT him to say - but he doesn't. He just looks at me, tells me that everything is going to be fine while trying to digest all of this himself. I expect him to be there as this rock, this solid rock of positivity, of reassurance, of constant comfort - and I forget that he is going through this too. Then I worry that he doesn't have anyone he can go to with this - no one he can go to to talk about his fears, his anger, his frustration. It isn't me anymore - I don't know who he is talking to, and it breaks my heart. I am then reminded of where I really can find all of this - and it brings to mind the ironic 'word' I chose for this year to work on and incorporate into my life - TRUST. Frickin ironic, eh? Well, this word could not be more appropriate for what I am facing now.

Then I read a story in the paper of a 28 year old mother who was also 6 months pregnant with their 2nd child who suffered a brain aneurysm and both died and I think - wow. We really just don't know, do we? None of us know - and it's tragic at times, ironic at others, miraculous at others - we just all have these individual journeys and we just don't know what they hold in store for us. I'm trying really hard to just operate in 'feel' mode, and I am feeling so great. It's like this inner battle is ongoing with my thoughts trying to 'take me down' so to speak. My heart versus my brain. I heard recently that it's a hell of a lot longer than just 18 inches between your head and your heart - ain't that the frickin truth, right? In any case, the past few days have felt like an inner battle between the two.

So I had forgotten the insurance dance that needs to take place in obtaining the Xeloda pills. I did remember the $5k cap on name brand drugs on our policy which is why we had to apply to the drug mfg for financial assistance last time (they don't make a generic of course) but I forgot about the $500 deductible. So now I've added winning the Publishers Clearing House Sweepstakes to my list of nightly prayers. Hey - someone has to win, right??? In any case, we're making our way through that red tape right now so we can get started on it as quickly as possible. I started the arimidex (which does have a generic thank you GOD) on Sat and that is fine so far. I don't remember when the side effects of the Femara started happening way back when, but I'm trying to just keep moving forward and not think about it. I go back to CTCA on Friday for a bone scan which is standard when starting an aromatase inhibitor and a meeting w/ my oncologist. I'll be asking some questions - like, how do we know this is even breast cancer on my liver - should we investigate liver cancer chemos - why isn't surgery something we are talking about - why can't we do theresphere again with a higher dose - those kinds of things. I want to make sure I'm focusing all my attention on what the current plan is, and sometimes I think my me thinking of all these other things I'm already assuming this current plan won't work - but then again I realize, there goes my brain again, I have to tune in more to my gut - and my gut says that I'm fine. I just need this stupid scan to catch up with how I feel.

Amidst all of this I have been taking an Arizona Defensive Driving Course in order to negate the speeding ticket I received - what a dichotomy that has been, seriously. So awesome you can take them online now, and log in and out when I had an extra 30 minutes or so. It has been an awesome diversion, so well timed for my first speeding ticket - ever. And thankfully, it won't appear on my record - cuz that is REALLY IMPORTANT isn't it? In the big scheme of things? If you're wondering like I did how they know it's you and that you're even paying attention through the course, the one I took threw in these random statements in the middle of the course section. Like I'm reading about lane changing and all of a sudden it says 'Corporal Klinger in the hit series MASH wore a size 10 dress shoe.' Then they would test you on this at the end - it was hilarious. So that, ironically again, was a blessing.

The message this last Sunday was about Fear - again the irony - and we recited Psalm 23 - which I couldn't get through without crying. But to be completely honest, the softest place I can fall is in the arms of my Lord and Savior. He is the only one who knows, in the deepest part of my soul, where I am and what I need. He is the only place I feel safe - the only true place I feel peace, and comfort, and assurance of hope and my future. If I just take the moment it takes to tune into it, especially when I am feeling the battle of my mind, then I find peace - but doing that continues to take practice, and discipline, and trust.

I sat in a steamed bathroom last night with Ginger who woke up around 12:30am with this horrible croupy cough. Then laid her next to me as she struggled to breathe through her coughing and was awake till 3am. This is where I'm meant to be, this is who I was created to be, this is what the Lord has intended for me to be. Right here - right now - in this family, mother of these children, wife to this man. No one can ever take that away.

God Bless -

Not What I'd Hoped

2011-01-27T19:02:00.000-08:00

Well, the CT scan has revealed the largest tumor which was shrinking and dying 2 months ago, growing again. And, unfortunately there is an AND, there appears to be additional tiny tumors appearing around it. So, back to the drawing board. We have decided to go back to the Xeloda, the pill form of chemotherapy but on a different dose. A daily dose of 2 each day - rather than the previous 8 pills a day for a week, then a week off blah blah blah. This is supposed to provide and consistent nonstop flow of chemo, without the horrible side effects I experienced before. I also have started the estrogen blocker, which I knew was coming. So there we have it. Here's the strange part - my liver function is completely normal, my tumor markers are low (not that that ever mattered), my bones are healed pretty much, it hasn't spread anywhere else and I feel great. I asked my doc if this was normal, and he looked at me and said 'Dina, nothing about you is normal'. I then told him that this was not the first time I had heard this comment. We laughed.

Here's the deal - am I disappointed? Yes. Did I logically think theresphere would do it? Yes. This shows me that there is no logic to this disease, or at least, to me having this disease. Everyone seems baffled. I'm lucky that I am so healthy everywhere else, my body is obviously fighting this with everything it has - this tumor is just stubborn. I am not going to go to the dark place, or have a pity party, or change any plans I have made for me - I will not let this disease rule my life like I have in the past. I need to be careful not to tread into the 'denial' part of this thinking, I need to remain proactive and assertive, but I will not let it dictate my mood, my life, my purpose on this earth. Maybe I'm just getting used to it, but this is where my head is tonight. So we have to get the paperwork in order to send to the pharmaceutical company to get me signed up for financial assistance for these pills again, and I already have the estrogen blocker to start taking tomorrow.

I was blessed enough to speak with my friend Pastor Mary tonight and we talked about this at length tonight. Here's the odd part: I feel fine. I feel great actually. My doc knows this, and looking at everything else about me, tells me that he is 'treating the scan'. Hmmmm. How curious. You know what? I'm going to go out on a limb here and say that I feel healed. If he needs to treat the scan to match how I feel, then so be it. I trust the Lord, and in my opinion, I am already healed.

So, ironically I hear this new song on the drive back home tonight, and I need to share these lyrics - it is pretty frickin awesome - I totally put this on my ipod already

This Is The Stuff
Francesca Battistelli
from the album This is the Stuff - Single

I lost my keys
In the great unknown
And call me please
'Cause I can't find my phone

This is the stuff that drives me crazy.
This is the stuff that's getting to me lately.
In the middle of my little mess
I forget how big I'm blessed

This is the stuff that gets under my skin
But I've got to trust You know exactly what You're doing
Might not be what I might choose
But this is the stuff you use

45 in a 35
Sirens and fines
While I'm running behind

This is the stuff that drives me crazy
This is the stuff that's getting to me lately
In the middle of my little mess
I forget how big I'm blessed

This is the stuff that gets under my skin
But I've gotta trust You know exactly what You're doing
Might not be what I might choose but this is the stuff You use

So break me of impatience
Conquer my frustrations
I've got a new appreciation
It's not the end of the world

This is the stuff that drives me crazy.
This is the stuff
Someone save me
In the middle of little my mess
I forget how big I'm blessed

This is the stuff that gets under my skin
And I've gotta trust you know exactly what You're doing
Might not be what I would choose but this is the stuff You use

This is the stuff You use

I'm off to figure out how He wants me to use this.
God Bless

Smiling Through My CT Scan

2011-01-27T11:43:00.000-08:00

I can honestly say this is the first time I've done this. I am sitting here at a computer station at Cancer Treatment Centers of America because they ROCK and awaiting my dr appt with my team to get the final results of the theresphere procedure. I was in here this morning around 10am for my CT scan, and I have to say, I was smiling, almost giggling, through the entire thing. I have no idea why, it's just that I am filled with so much joy today - it's weird. Considering I had reached my breaking point last night and blessedly, my husband caught on and suggested quite sternly to go take a moment in the bedroom to myself. Normally I would dismiss this suggestion and say that I was fine, but that little voice told me to push through the pride and go take a moment. I didn't even have the door closed and was in tears. Sometimes we just need a good cry, I think it is really just as simple as that. There is so much going through our brains that we reach a 'full capacity' mark and we need to deflate. I picked up my Mother's Bible cuz that was the closest and went back to the index to find just the right verse to, well, I don't know, bring me comfort? Explain what I was feeling? I don't know - I just went there. I looked up STRESS in the index and for those of you who have one of these amazing Mom's Bibles, go to page 619. It did not direct me to a Bible verse, but a devotion. I would post the whole thing here if I had it on me, but I don't - but I will share this portion of it with you as I shared this on FB last night:

‎'When we cry, we admit our human frailty to ourselves and those around us. We express our finite limitations as mothers and as women. We acknowledge our weaknesses without relinquishing ourselves to their power.'

Amazing. I felt cleansed and refreshed in just enough time to hear my little ones sobbing 'Mommy! Mommy!' outside my bedroom door. It took all of about, 10 minutes. So I guess I just wanted to share that coming from someone who overthinks EVERYTHING - sometimes we just need to give ourselves 10 minutes and just cry. Then take a deep breath, thank God, and return to life. Keep it simple stupid. (i say this to myself, certainly not calling anyone stupid)

I arrived here this morning, and was almost skipping into the building. I don't know what these results will bring, but I do know that I am feeling the most centered, physically and spiritually, than I have ever in my life. I am so much closer to complete trust, it is really and truly amazing. I sit in these waiting rooms, and I see the faces of all these other cancer patients, and the ones I am most touched by are the ones who look down - the ones who try not to look me in the eye - the ones who are afraid. I just want to reach out and hug them and tell them it's ok - so I try hard to catch their attention and then just give them a subtle smile. I don't care if they smile back or not, because I know what a difference a smile made to me when I was where they are, fear wise, and it was like a dim light was shone into my heart, as corny as that sounds. Fear has no place, no home in this disease - yet it seems to be the first one to walk through the door - right? It is human to fear, but God is bigger than this - and it is in that we must trust. It takes practice, lots and lots of practice - but pretty soon, it becomes second nature. I'm so happy to be closer and closer to that place.

Someone recently said to me that I was 'the face of hope' to others facing this disease - and I was blown away by this. Me? Ironically enough, I sometimes think that I'm the LAST person people want to see when they are diagnosed or find themselves close to this disease simply because of the seriousness of my specific case, but then I have to remember - I am walking around being me just as much, if not MORE than I was before I knew I had this - I guess that is a good thing to see. I'm not the preachy type of person, I think I can say a lot more in simply reflecting his love than to come out and say "Hey! You better give this to God and get that relationship with Jesus thing goin for ya Mister!!!" Not really my style. If me simply being around people and reflecting what my spirituality has ignited in me gives people hope? Then I'm doing exactly what He is intending - whether they believe or not. I think people get this on many levels - I often pray that people know God's presence in whatever form they are able to understand it. Be it a gentle breeze, a sudden rush of enthusiasm you can't explain, or suddenly finding yourself in the short line at the DMV - whatever works, right?

This week, and it's only Thurs, has been filled with moments for me that have tested my faith - in people and circumstances. I am so happy to discover that my instincts have changed. It sucks that it was cancer that got me to the place where this change started to occur, but it did. I obviously am rambling here because I've got time to kill before this dr appt - so I'll wrap it up with this: I had a random mental picture this morning as I drove into Phx of me standing in soft green grass, sun beaming down from above, my children standing next to me looking up at my face, smiling, and me looking up to the heavens, smiling. Not intentionally leaving PJ out of the picture here, but what I think this means, I don't really know, is the lined connection in this vision that just keeps going and going and I take great, great comfort in that. If I were looking down at my children the connection would only go back and forth and not go anywhere, but looking up makes the connection go right through us, as one. Alright, I'll step down once again. PJ always tells me that I have to be up higher than everyone else, I assure him it's only because I feel like I've been 6 feet tall my entire life. I know nothing else. I'll keep everyone posted.

God Bless

Good News Travels Slow

2011-01-25T19:49:00.000-08:00

The most comforting words I received this past week - 'Dina, bad news travels fast, good news always travels slow'. So true - finally got a call yesterday from my pediatric neurologist that Ginger's MRI was normal. Thank you God. I held my heart and just cried tears of joy. We still don't know the WHY but at least we now know what it's NOT and that, is so frickin awesome. We can now breathe a $1700 sigh of relief. Now, I didn't actually speak to the dr on this, so I haven't connected with him as to his thoughts on what to do for the future, but I have to say, I have already seen a dramatic change in who Ginger is with the small adjustments I've made in raising her since her last seizure Dec 19th. I think sometimes we just subconsciously assume the 2nd child is the same as the first - she definitely is not. I make her eat, she drinks very little milk now, I keep her routine very consistent, I tune into her when her surroundings get too chaotic for her, and I can totally tell when that happens. I thought at first it was just wishful thinking on my part, but after these results, I know my gut is right on this. Looking back and her seizures I've realized some other commonalities that made me make these changes, and I just feel, in my gut, that they are working. We'll see. For now, I am so happy and praising God for this news. Thank you.

I have my next appt at CTCA on thurs - my insurance will only pay for a PET scan every 3 months, so I will be having a CT scan and then we will have the final 12 week results from the theresphere. I will meet with my team of drs and see what the deal is. The beauty of CTCA is I get the results right then, no waiting. So cool. I figure worse case scenario is they will recommend I get the other half of my liver done - but best case scenario is its gone and we're on to the estrogen blocker. I am ready for whatever they have to throw at me. I have been feeling so wonderful lately, and have really made some strides to my life to promote a healthier lifestyle, both physically & spiritually. I am reminded each day how precious this life is, and what a privilege it is to be here.

So I was in my plastic surgeons office today with Ginger, and he has booked me for my final appt for reconstruction - the tatooing of the aereolas. I go in on Feb 15 and if I am healed enough, I go right in for the tatooing. Anyway, Dr leaves the office after my exam and Ginger is sitting on the chair in the exam room playing with the sample silicone implant. I look over to her and she presses her face into the implant and makes this huge fart sound into it. We both started laughing so hard, it was awesome.

The message from this past Sunday's sermon has really stuck with me. The phrase was 'God is bigger than the boogeyman'. I try to remember to give my hurt, my pain, my frustration, my fear - all those emotions to the Lord. What I forget, is to hand the very thing that causes me these things over to Him. Complete trust. When I have remembered to do this, He always takes care of me. So right here, right now, I am handing Thursday's appt to Him. I trust Him completely. Whew! Now I can go paint my toenails!

God Bless -

My Cancer is Better than Your Cancer

2011-01-18T20:24:00.000-08:00

It occurred to me while in the shower this evening, that when people approach me with their cancer stories, they usually end it with something like ' but I never went through what YOU'VE gone through' or something like that - and I think I've been taking this completely wrong. I was hearing this to say "your cancer was WAY worse than mine' but what I think they have meant is that they didn't mean any insult to me by trying to compare cancer stories. Now, to me - cancer of any kind just plain sucks. So comparing - as much as we can't help ourselves from doing - is just silly. Everyone is different and the smallest of cancer cases can hit someone like a load of bricks then on the other hand the worst of cases someone can seemingly fly through - so - my point is once again, as I think I've done like a buttload of posts on this subject - it's all relative. Cancer just sucks for anyone who has it - and we just can't compare my cancer to your cancer to his cancer to hers. It just doesn't work like that. I suppose we subconsciously want to find some comfort in someone else's experience - something to tell us 'its going to be ok' - problem is, we would then have to listen to ALL of the comparable stories, and who wants to do that? I'd only want to pick and choose the ones I would like to compare myself to, and that is just not realistic. So, we walk our own path. Holding His hand in ours, some days tighter than others. And I try to remember myself in fact - to walk along side my fellow cancer survivors, and hold their hand with my other hand, some days tighter than others, instead of compare myself to them. We need each other - for better or for worse.

So Ginger had her MRI on Friday and I have to say, it was a pretty awful experience. They had to put her out for this, and I thought they would do this by IV but alas, no. The IV went in AFTER they put her out. They used the mask and I held her as she wrestled to break free - it was awful. I actually held it together until they laid her down on the MRI machine and told me to kiss her goodbye - that's when I lost it. She looked, well, it was just awful. I waited in the waiting room and just started texting my friends to pray, and I just sat there and cried while I did it. They almost didn't let me in the MRI area because of the stupid 'clips' I have in my arteries after my theresphere - didn't realize those were metal and the MRI machine could possibly dislodge them - hmmmm, that would not be convenient would it? They figured out a way to make it work obviously, but I was so pissed that this suddenly became about me - and this was NOT about me, this was about Ginger. In any case, the amazing staff at PCH came and got me when she just started coming out of the anesthetic, and I had a feeling this was not going to go very well. In normal everyday Mountcastle life, if I wake up Ginger before Ginger is ready to wake up, she is a complete bear. I mean, bad. So I had a sneaky suspicion that this was not going to go well - I was right. She cried, she screamed, she kicked, scratched you name it - and she did all of these things at once, slowly increasing her energy level. I finally got her somewhat calmed down, and luckily she got into the car and was asleep within 5 minutes of pulling out of the parking lot and I just got on the freeway and started driving. By the time we got home, she was pretty much completely back to normal. I felt like I had been put through the ringer. This mom stuff sucks sometimes. I just wanted to do it for her - it was heart wrenching to see my baby being scared like this - I can't even explain this. So now, I wait. I called yesterday morning then again this afternoon. Nothing. Trust Dina, trust.

So far the exercise is going great, and I am feeling stronger and stronger each day. I've missed this the past 2 years, and looking forward, I don't believe I will have the 'surgical interruptions' I kept having last year and the year before that. I'm feeling really great. If all goes well, I think I'm going to try to do the Komen 3 Day Walk this year. We'll see - but I think I could really do it this year. I've wanted to do this the past 2 years, but for obvious reasons, was not able to push myself when it came around. This year will be different. It already is.

I'm back taking a WOW class, and my MOPS is going great - and the past couple of weeks I just have decided that if there is someone I want to spend time with, or something we want to do, we need to try to just see that person, do that family thing, see that movie, blah blah blah. Life is just too short to keep making excuses for not doing what fills us up - ya know? I'm not talking about doing this in an irresponsible way, you can't lose focus on being responsible - but the moment I realized that perhaps I have lived my life subconsciously abiding by what I thought I 'needed' to do rather than what I 'wanted' do to - it's like a light switched on. I WANT to love on my family and friends, I want to make time to give back, I WANT to spend more time in the Word, yet we push these things aside for things we feel we HAVE to do. Interesting, and I'm trying to make strides to change my mind on this - we'll see.

Please keep the prayers coming for my Ginger. My gut is telling me everything is fine, and this test, this very expensive $1700 test, will simply put my mind at ease. I'd keep paying this off a thousand times over for sweet peace of mind. Trust Dina, trust.

God Bless -

Dina's Stand Up Cancer Act

2011-01-13T20:33:00.001-08:00

So I just finished doing a talk at the Yavapai County Shriners Club dinner. This is actually a funny story how this came about - my father asked me weeks ago if I would come and talk to this group for their first combined meeting and, seeing I had given my 'testimony' a couple of times I thought that that was the kind of 'talk' he was referring to - a faith/cancer walk kind of talk. So I agreed. Then I got a copy of the email that went out to all the members saying Dina Mountcastle was going to do 'stand up'. wha? yikes - I haven't done stand up in like, 20 years, and trust me - the material I used way back then, although I still find pretty funny myself (beef jerky is timeless material) I didn't think would be received all that well by shriners. And I wasn't really ready to make my cancer that funny. In any case, I told some funny stories about my dad, my hubby, my kids, then talked about my cancer walk, my faith, a little message about living life int he present and ended with a slide show. It seemed to go over well. I did try to make cancer funny - I need to work on this a little harder though. Right now, I think the only people who would feel comfortable laughing out loud to that humor would be other cancer patients. Hmmmm. Might be onto something there. I know I have a message to give, just trying to figure out how to find it. These things help though - and I felt so blessed to tell my story and share wonderful pictures of my beautiful family. I am so proud of my family.

So I take Ginger to PCH tomorrow for her MRI. We have to check in and 11 and her test is at noon. She will need to be completely sedated, so I am working through this and ready to be the strong mama tomorrow. Please keep her in your prayers. I am hoping we finally get some answers - to find out what it's not hopefully. Trust Dina, trust.

Madeline is now sick too with some sort of tummy bug - so it looks like we will have a quiet weekend at home. When it rains it pours.

I am feeling fine - I did actually order a glass of wine this evening before my talk, but had just a couple of sips. Didn't taste right - which is good. I think it was probably cheap wine, but still, I made a choice and that felt good. To be honest, I think it was indeed the alcohol I was consuming that was giving me the flushing of the face - so there ya go. My body telling me to knock it off. Message received. Bummer.

It's kind of a catch 22 I think - I am so thrilled to be off of everything for the past 12 weeks, it almost makes me forget my disease. It's been like a mini vacation - and I am loving it. What comes along with that however, it all the stupid crap that enters my mind and I start worrying about. All that crap I realized when I was knee deep in my disease was a complete waste of time slowly creeps back now that I have been blessed enough to take a couple steps back from it for a short time. I suppose that is the frickin humanness of all of us - and maybe just being aware is enough to swing it back in the other direction, I hope so.

I'm a bit tired and need to go check on my chicks. One thing I do remember everyday - is how lucky I am to be the mommy of Madeline and Ginger, and the wife of PJ Mountcastle. A reminder to myself to keep it simple stupid. Everything you need is right there in front of you.

God Bless -

Dina's Stand Up Cancer

2011-01-13T20:33:00.000-08:00

How Fast Was I Going????

2011-01-09T20:12:00.000-08:00

Well, I'm feeling pretty good actually. I will have one more month here before I go back on an aromabase inhibitor (estrogen blocker) so I am soaking in each and every minute of this - and loving it. I had discussed w/ my onc when I was in on the 30th that I had been on Femara and had really bad joint pain. We spoke about the monthly shot - faslodex - as I had heard the FDA has just approved it for double its dose - and he said that that would feel very much like the Femara, and that the shot itself was quite uncomfortable to endure. He said he will most likely put me on arimidex, because they released the patent on it and I can get it for like $10 a month and it does the same as Femara with less joint pain. I'll still HAVE joint pain, just hopefully a little less severe than with the Femara. We'll see. How cool though that I have a full team of dr's to work with to try to counteract any of these upcoming side effects - so frickin cool. I feel like I'm in such good hands. It is a nice, relaxed and peaceful feeling. Haven't felt that in a looooong time. Went to Phx to have my top checked out and it's not infected. Just not healing on one side as fast as it should be. So I'm just tending to it and it's actually doing really well. So that is a HUGE blessing.

So it seems that I was in need of a lesson here last week. The good Lord above needed to teach me about patience I believe - the hard way. I got a speeding ticket. I have never, ever, received a speeding ticket and yes, I am the wife who bitches at her husband that he is going too fast, I am embarrassed to say. Well, not anymore. Ginger was having one of her temper tantrums Fri morning, and these are quite a show if I must say so - she will cry so hard she will give herself hives, then try to make herself throw up. These are often pretty easy to handle when we are at home, but when we are in the car, it is particularly challenging. Anyway, this one section of highway that I travel on ALL THE TIME is now under construction and I was going along like I always have, constantly checking back on Ginger when I was pulled over. I was going 60 in a 35 according to the cop. Luckily he gave me a huge break and ticketed me for 55 in a 35 and didn't double it (which he totally could have done) but I was just mortified. Of course when I tried to explain that I was looking back at my kid who was crying instead of noticing the speed limit signs, I look like a huge ass because of course, she had stopped crying as soon as the cop pulled me over. He took my license and registration and went back to his car - I looked back at Ginger with a look like 'are you happy now' and she belts out "Happy New Year Mom!". Oy. This child, this child of mine.

We feel so judged don't we??? Like, I wanted to call him after the fact and explain to him that I always follow the speed limit, this was just a weird time because of Ginger and her seizures and blah blah blah - so funny. I didn't cry though - I almost did - but didn't - guess I'm growing up. :-)

THEN - yes, it gets better - then I wake up Ginger that afternoon to put her in the car to go pick up Madeline from school - and I have a flat tire. Who? Who the hell gets a speeding ticket AND a flat tire on the same day???? ME! I didn't really think I was rushing - I really had thought that I had let that go - that rushing, urgent, nonsensical way about me - like everything I had to get done that was was just so frickin important - please. I really thought I had let go of that - cancer showed me just how frickin stupid that frame of mine was - this was obviously trying to point something out to me. I'm not even quite sure I have figured it out yet to be honest. It humbled me - I'll give it that - I'm certainly not going to be giving my hubby any more shit for his driving style. And it reminded me that it's not always about me - a mind trap I am constantly getting caught in again. It's weird, like, I'll explain this with something simple - picture me, holding a sleeping Ginger who weighs 37lbs, walking into a tire place to get some help for a flat tire - and no one opens a door, sees what I need, offers to help - nothing. I get infuriated by this. Now, I ended up leaving that place and praying I would get to the next tire place down the street on my leaking tire - which I did - had a lovely experience and the guy, who had never seen me ever, repaired my tire for free. I looked at him and said ' you just earned a customer for life - thank you so much'. (Big O Tires in Prescott Valley - they ROCK!) I guess the point I'm trying to make is I'm starting to relapse into this frame of mind I had before cancer where I just expect everyone to notice others in need - and they don't, and it's frustrating. But ya know what? - some do - like Big O Tires - and I need to remember to allow the ones that do - to be the stories I tell, and not the ones who don't. They may be fewer, but they are much more powerful.

So - Ginger has her MRI on Friday at PCH and I'm nervous but ready to get some answers. I have completely changed the way she eats since her last seizure and maybe it's just wishful thinking, but I feel like she is a completely different kid. I'm much for hopeful than I was when I initially scheduled this test. Ready to move forward with this.

PJ and I had date night last night and went and say True Grit which, I thought was awesome. Now, I hadn't seen the original, so I don't think my opinion really counts, but I really liked it. I recommend it simply to see the actress who plays the young girl - she is amazing. Needless to say, I am so sleepy tonight, I need to hit the hay. Starting a new exercise class tomorrow morning too, so want to get ready. I really want to lose this weight this year - doesn't look like my exercise schedule will be continually interrupted by frickin surgeries - so things are looking good already. Luvin my boobies by the way - I'll post some pics here soon before the tattooing - want this icky part to heal a little better first.

God Bless

New Year Enlightenment from a Chemo Chair

2010-12-31T18:13:00.000-08:00

This past couple of weeks has been a whirlwind of emotions. Had a lovely Christmas but I must admit I spent most of it enormously worried about my mom. She and Brit came to spend the holiday weekend with us and watching her fight through this chemo is tough. Tough for her, and tough for me. I wish I could fight it for her - there I go again, trying to wear her shit. In any case, she's fighting. Then we packed everyone up and did a 24 hour road trip to Sierra Vista and back for PJ's Gma's celebration of life services. I was worried about this trip - financially and also because of Ginger's recent seizure pattern. Fortunately, God provided us the funds to go (and a broken hot water heater to boot) and I adjusted my car rules to try to accommodate Ginger in making this trip as comfortable as possible for her. All went well, and the service was absolutely breathtakingly beautiful. I've never witnessed one of these Catholic masses, it was astounding. What a respectful way to honor someones life.

I then headed to my appt at CTCA on Wed of this week - my 30 day check up. I really didn't think much about this appointment - I was settled in the fact that they would be running my blood work then I would get my calcium treatment and that would be it. I'm really enjoying not being on any medication at all right now. Feel like myself again. I know this will not last forever, the estrogen blocker is on the horizon - but they need to keep me clear of everything until the theresphere takes it's full effect - 12 weeks - so I've got one month to go - woo hoo!!! It had snowed all night the night before, so driving out of town was a bit challenging (thank you PJ for making fun of me skidding down the road), but off I went.

I didn't know how much of my old 'self' I had been feeling - and I didn't expect to address some things at this appointment either. This is difficult for me to write about, difficult for me to face up to - so here it goes. I'm sitting there in the examination room, as I do at each of my appointments. As these appointments usually work, I am scheduled to see my whole team each time I arrive one at a time - my onc, my nutritionist, my natuopath, etc. I didn't see my mind and body therapist on my schedule, and felt like I needed to see him to talk about my mom - so I asked if he could be switched with my naturopath - done. Seems though legally I still need to meet with that guy because I am taking supplements, so we chat and I start asking about my mom's supplements she is currently receiving. Interesting. So then my onc nurse, Amy, who is like someone I have known for years but I guess I've only known here since I started going to CTCA - she says she is filling in for my case worker who is out of the office. This, is not by mistake. I feel WAY more comfortable with Amy then I do with anyone else - which is where an issue now starts to be addressed. I'm talking to my doc and others about my face flushing - it has been flushing for a couple weeks now, on and off, and it's really annoying. My cheeks right under my eyes get burning hot - and I don't know why. Is this a side effect of the theresphere? They check with everyone involved - no. Maybe it's something I'm eating or drinking. What are you eating or drinking? I answer, 'well, I've noticed it after spicy foods, when I drink lots of coffee, and when I drink a couple glasses of wine'. Amy asks me 'how much wine are you drinking?'. I answer 'one or two glasses a night'. She looks at me - she looks at me with the kindest eyes, and says 'no Dina. You have to stop that. That could actually cause a re occurrence and your liver is already working hard enough as it is'. I am sitting there, embarrassed, humiliated and baffled at myself for making this choice. I recall this behavior from years ago - alcoholism runs in my family and I know I have an addictive personality. I fall into the 'all or nothing' category. I take a quick inventory of my behavior and realize this has been a pattern of mine for the past, maybe 3-4 weeks. Taking a percocet and having a couple of glasses of wine - every night. This is how I have been choosing to handle the stresses of my life - and not to defend the behavior, but my plate has been full and it makes sense that this happened I guess. From my husbands father, to my mother, to Ginger's seizures, to me - the list is a bit longer but that's what I've been processing, and now I'm very well aware of the way I've been choosing to process it. Not good. Enter the mind body therapist now, who has been brought up to speed by everyone else on my recent behavior. We talk about my mom, I cry, we talk about my choices in drinking wine so often - and he says something very powerful to me. He says 'I take it there is alcoholism in your family?' I answer yes. He says 'then let's break that cycle here - now - for your children'. Wow. I told him I felt like an idiot - I can't believe I was doing this knowing my liver was trying to fight cancer. He said I was not an idiot - that it wasn't really a choice at the time, it was a behavior. Now that I'm aware of the behavior, it's time to make a choice. I truly felt like this was a mini-intervention - talking about this was the furthest thing from my mind that day - to be honest, I didn't think anything was really wrong. I was lost in my behavior.

So, my onc walks back in and says that the last scan I had last month showed some fluid around my heart. He thinks this was probably due to the theresphere and week long chemo, but wants to do an echo cardiogram just to be sure. Okey dokey. OH - and he looked at my recent TOPS surgery and thinks one side it a little infected. So I call my plastic and he has called me in an antibiotic for me to take for a week. Yay.

I do the echo - then I go up to infusion for my calcium treatment. I have a nurse, Peggy, whom I've had before - she is lovely. They are all - lovely. Are you comfortable, do you need anything, can I order you lunch, something to drink - it's like the Ritz for cancer patients - seriously. Anyway, I don't know how we got on the subject of faith, but I made the statement that I didn't know how anyone can get through this life, cancer or not, without their faith. And she says this "Where else can you go when you get to the end of yourself?" Wow. I thought about this statement all the way home. I am so very grateful that God has placed these people in my path - to lift me up to Him when I get to the end of myself - to care for me - to love me - in the way that they have been called to do. I was suddenly filled with this strength, this will, this readiness to face life with my spirit - and nothing else. I was able to see why I had reached for these things - these things that made everything just fuzzy and out of touch - so I didn't have to 'deal' with it - or I felt that I was dealing with it with better eyes. I was wrong and these people caught me - unbeknownst to me.

So I come home and discuss all this with PJ who is extremely awesome as always. He says he will stop drinking beer, which he totally doesn't have to do - but he says he will. I told him that if this turns out to be like when he stopped drinking coffee for the Fat Smash and turned into a total asshole, that he needed to promise me he would just drink a beer. He agreed.

I read my daily devotional that evening, which of course I hadn't really read in weeks because, well, I just hadn't. I need to share a portion of this - I know we can read something relevant into just about anything, but this is just freaky:

'Sometimes, all I think about is what I can't control. I focus on the problem and the unfairness of the situation. Even though I've prayed, confessed my needs and presented my resources to Jesus, I stay focused on what I can't do. It's a pretty limited view of the situation.

I somehow forget that I'm standing next to the One who can feed 5,000 people with five loaves of bread and two fish - and have leftovers! Sometimes, instead of doing what God has placed in front of me, I do nothing.

Perhaps, instead of wringing my hands with worry, I need to get busy with what I can control. There's always something I can do to bring order to my situation. It's not a distraction technique, it's an act of faith. Jesus is still in the business of miracles, and I definitely can't do those.

Dear Lord, forgive me when I focus more on my own limitations rather than Your power. There is nothing too great for You. Help me to turn my thoughts away from what I can't do, to what You have placed in front of me. I trust You to do the rest. In Jesus' Name, Amen.'

I was listening to this radio station on the way down to Phx that day and they were talking about New Years Resolutions. They were choosing to use a word instead. Come up with a word - a word that describes what you want to try to accomplish within yourself for the year. That word can be a type of 'mantra' for you throughout the year. After much thought, it just has to be TRUST for me. I feel like I've got a pretty good start on this word, but it needs some serious tending to. Tall order. But I've got a word I can focus on this year. Totally excited to get started.

Happy New Year and God Bless -

Wear Your Own Shit

2010-12-23T06:56:00.001-08:00

So I truly believe it was something spiritual that gave me this image the other morning, as a way of defining what I have been feeling this past week. I will try my best to explain this here.

We all have our own shit going on - all of us. You can't compare that my shit is worse than your shit - it's all relative. To US - it is the most important. Now think of all this shit as clothing - like we all have our own situational closet full of clothes - wearing what the day tells us to wear more than likely, rather than CHOOSING what to wear and making the day what we CHOOSE to make it, as God teaches us. Anyway, I digress. It seems I have been trying to wear other peoples clothes again. I try their shit on, pry myself into it, find myself swimming in it - in the long run, it just doesn't fit - why? Because it's not mine. It's not mine to wear - that's why it feels uncomfortable, which then leads to anger, frustration, irritability. I put peoples clothes on and think I can MAKE them fit me - so I can fix it - then give it back. Problem is, if my some means of a miracle I was actually able to fix it and make their clothes fit me, then when I went to give it back, it wouldn't fit them anymore. It is the hardest thing to do sometimes to just walk your own path, wear your own shit. I think sometimes I DO want others to wear mine, then I won't have to. It goes both ways. Point it, we have our own shit that we need to wear, figure out, and choose to deal with. I am the ever longing 'fixer' type of person, so this is especially difficult for me. I must learn how to support people as they wear their own shit, and respect them on their journey, and certainly get back to wearing my own. I suppose SHIT is a strong word to use, perhaps it should be LIFE or STUFF or something like that, but this is just what came to mind.

So, back to my shit. I spoke w/ Ginger's neurologist yesterday and we are going to schedule a MRI. It was a wonderfully comforting conversation, which in the end he stated that he did not have the eyes to look inside her brain and see why this was happening to her, but this test would give him those eyes. Fair enough. Until then I am finding myself being a 'hovering mommy'. Not really feeling bad about it either.

I am healing well I guess, we are heading to phx today for my f/u. One side kinda looks like its half dead tissue or something (the left side of course, the side that has protested this all along screaming THERE WAS NEVER ANYTHING WRONG WITH ME!!) so we'll see what he says about this. I'm bringing both girls w/ me again, so this always proves to be interesting. Fighting a cold right now too - just trying to get sleep at night, yea right.

Despite the STRESS that seems to live in my house right now, I am trying to be present in these days leading up to Christmas. I am a Christmas crazy kind of person, and I am turning my girls into the same. PJ? Not so much. Oh well. These days are gifts I am reminded this morning. I wake up and continue to thank God for the life I have been blessed with - and to soak each moment up as much as possible.

This past year was so different than the year before with this disease - I can only imagine what is to come. What I do know is my kids fight over which side of mommy they get to cuddle with - and ya know what? If my days are filled with breaking up those kinds of arguments - then I'd be silly to not wear my own shit - it actually fits quite nicely.

God Bless

The Price We Pay for Teacup Piggies

2010-12-19T19:15:00.000-08:00

So - surgery was Friday and it went just fine. So glad to not have to go back under the knife again for any of this reconstruction stuff anymore - Praise God!!! My good friend Jennifer took me down for my surgery and drove me home - we had a pretty good time actually. Funny how a surgery can also decoy for some well deserved 'girl talk time' in the car. We had a great time, laughed a lot - and she is an absolute angel for doing this for me - a week before Christmas when everyone is running around like crazy people. What a gift our friendship is to me.

So - I have these 'caps' taped to my boobs that seem to be holding on my newly formed 'nips' we shall call them. This is hysterical - so get this - at the pre-op - I tell him I don't want them very big and he says to me ' oh they are going to be pretty big so don't freak out'. Wha? I was like 'what do you mean BIG - like thumbs? what is big?' He says 'no they are going to be just kind of tall - they shrink though so don't worry about it. It's easier to make them smaller than it is to make them bigger'. Hmmmm. Now, I'm not sure how he did this, this is the problem with going to these dr appts on my own now, is it is difficult for me to remember everything that is said or explained, mostly because I have my kids with me now - but what I think I remember him saying is he was going to cut into my own skin and gently form this 'nip' out of my own skin - not the scar tissue as I had originally thought - just above it actually. He said this was the easiest out of all of the surgeries and that I could basically go back to doing everything I did before on Monday - sorry to say that I had a full weekend schedule this weekend, so I probably pushed it a bit too much. Again, week before Christmas - lots to do. Thus my title. My surgery was at 3:30 in the afternoon on Friday and yesterday I was at the Prescott Armory helping to sell raffle tickets at noon for our MOPS fundraiser. Was there till 4 then made the trip to the church to store the raffle items, met PJ at the mall with the girls where they saw Santa (precious!) then when I realized that the only Toys R Us up here had run out of Teacup Piggies (something Ginger really wants this year) I go gallivanting on to Walgreens while PJ takes the girls home to see if they still have any because I vaguely remember seeing them in a display but had Ginger with me at the time and couldn't do anything about it. Again with the frickin Walgreens - what is it with me and this place!!!! So a lovely woman who works there finds it for me - way on the top shelf and I am thrilled - I go to reach for it and feel something wet run down the front of my belly. Yep - I'm bleeding now - great. I excuse myself by saying I just had surgery yesterday and could I please use the bathroom as I was having a little problem. Luckily I indeed have the best hubby in the world who told me to pack gauze and tape just in case, which I promptly whip out and begin to bandage up my seeping wound. It wasn't that bad - more scary than anything else. But I must had been in there awhile because she came in asking after me. The point is - I got the Teacup Piggie for my Ginger. Hurrah! And I drive home beating myself up for pushing it way too much yesterday - shame on me. Now I'm just hoping I haven't caused one of my newly formed NIPS to just fall off. Pray Dina, Pray. Pray for the NIP to stay intact - please. This is the end, so don't f)(*ck this up!!!!

I come home and assess the situation, and it continues to bleed throughout the night, not heavy, but I did change the bandage twice before I finally went to bed. So yea, I was a little concerned. I also know I have another full day today - with a huge church service at our church marking the 140th year in existence, a rehearsal for Madeline who wants to be in the Christmas Pageant and then she and I are supposed to have 'girl time' and have our nails done - which sounded fine at the time, but now just sounds horribly stressful to me. I figure I'll be fine as long as I just don't move around too much and keep people from bumping into me or hugging me.

Without going into specifics, I just need to vent here a bit. The past week of mine has been filled with such a roller coaster of emotions I feel like I'm swimming in random feelings. From a heated discussion with family about PJ's father, to a heated discussion with my mother about her care and well being, to my surgery, to my pushing my own limits and not taking the best care of me once again, to feeling stress with our home church then it all comes to a head this afternoon with Ginger having another frickin seizure out of nowhere then my husband and I at each others throats this evening - when we should really be embracing each other in this 'fear' of ours instead of fighting each other. Even through this whole stupid cancer thing, I think I have subconsciously always felt like I have maintained some sort of control - I have been painfully mistaken. I feel so out of control right now, I don't know which way is up. I think I am trying to hard to be so many different things to so many different people, I am starting to go a little crazy. I watched my little Ginger with this seizure today and just felt like screaming ENOUGH!!! THIS IS ENOUGH!!! Then once I had her in a good place this evening and my hubby and I went at it I literally felt like running out the door and just running down the street screaming. I just feel like I'm about to burst - do you ever feel like that? Like you are just about to explode? I can hear God's voice - I can hear it, way off in the distance, telling me to trust Him, to give it all over to Him - but it's so hard - especially with your family - with your KIDS for Christ's sake - to simply hand it over - so hard. I was starting to think this surgery was just poorly timed, but I didn't have a choice really, my deductible refreshes at the first of the year and I would really, really really like to have a year without any surgeries - wouldn't that be nice? Now I have to get on the horn and start making calls about my Ginger - my sweet little Ginger who has now had 6 - 6 seizures in the last year and 1/2 - and I have no frickin idea why. No fever this time either - the last 3 were a complete mystery. I call the pediatric neurologist tomorrow. Please keep little Ginger in your prayers, if you pray - I just want some answers.

I don't mean to bitch here - I guess I just have a lot on my plate at one time here recently - and perhaps I'm handling it poorly. All I know is that my instinct is to come at things with Christ like eyes - to try my hardest to be the best person to everyone around me - to show up for each other. Sometimes lately I've felt like all I get is a big slap in the face, but I guess that comes with the territory. I'd rather be that positive person who more often than not is misunderstood and misread, then the bitter asshole sitting off in the corner.

Wow - sounding off a lot here - sorry for the rant, but then again, that is exactly what this blog is for. Still trying to fight cancer here too BTW - oh yea, that little ditty. I have attached a pic of what my recent surgery created - it looks pretty 'gross' as Madeline described - I get to finally take a shower tonight, so I'm going to go and do that. Doc said 'if the caps fall off, just stick em back on again. Let' s hope that doesn't happen. Yikes. This is so strange because I can't 'feel' anything - so strange.

Something the Bishop said at this mornings service has stuck with me today - amidst all of this BS going on in my life - that we were all created with a God shaped hole which needs to be filled. What an awesome image -

God Bless

I get new tits AND hair for Christmas this year!!!!

2010-12-14T10:54:00.000-08:00

So - last week was a bit rough for me. The Elizabeth Edwards thing hit me particularly hard - I couldn't help but compare myself to her - but I'm finding on this journey - we breast cancer patients seem to want to 'have our cake and eat it to' when it comes to this kind of stuff. It makes us feel good to compare ourselves with stories of people who beat it or are surviving it - then when we lose someone to the disease we spend all this time trying to convince ourselves we are on our OWN journey and that is very individualized. Funny thing is, no matter if the story is good or bad, we are still all on our own journey regardless. Hard to remember that sometimes. In any case, my heart breaks for those children who were robbed of a mother this early in their development. She didn't deserve this, and neither did her children. Wish her hubby would have shown up for her in a better way this last year of her life, but then again, this is not for me to judge. Not there when the lights are out - that was their private life, and I just pray she found some sense of peace when it came to her family unit at the end.

Speaking of robbing, my husband and I were just speaking the other night of what this disease has robbed us of - as a couple, there are many struggles. Again, I think it is ironic that breast cancer just seems to rob you of everything feminine about you - it certainly makes you dig deep within yourself to find the real you, and get real familiar with that part of yourself. I realized I had tied much of what I thought was "ME" in a bunch of superficial bullshit - this disease just strips all this down and make you stand there, 'naked' in a sense, in front of the mirror and asking the question 'who the hell am I?'. Similar to when you quit smoking or break a bad habit that you tied a huge part of yourself to - difference is with smoking, that is a choice to quit - cancer? Not so much. In any case, my hubby and I were listing how different we are now, and how we wished we would have taken advantage of what were were before this disease took hold. I'm talking sex, having another baby, stuff like that. Funny how I start to feel guilty when we speak like this, as if it was my fault this happened or something. There I go, trying to control everything again. Arg.

I'm feeling great though - I go for my final reconstruction on Friday so I'm curious to see how that turns out. PJ needs to work that day so my lovely friend Jennifer is accompanying me to have my 'tops' created - not many people you can ask to that strange event, eh? 'Hey Jen - would you mind driving me to the hospital to have my 'tops' recreated?' Nice. I'm excited to finish this, considering this time last year I was sitting here with infected expanders, fighting it with antibiotics and pain meds, headed to the Polar Express trying to make it through Christmas - we've come a long way baby. AND - so glad I decided to get back on the horse so to speak with this reconstruction thing - what a huge subconscious difference this has made for me, thus, my husband and our relationship. It has made a difference in who I wake up as each day, as corny as that sounds. It was definitely the right decision for me - not everyones choice, but for me, definitely good.

I'm starting to finally try to make long range plans. For the last 2 years just about, I've been living week to week - literally. I wasn't even aware I was doing this, but I was. Now, I'm starting to really change my attitude and look towards the future and make plans. Nothing extraordinary, just simple stuff like what we want to do for our summer vacation next year, stuff like that. Whereas before, I would never have looked that far into the future. Feels good - I am always prepared to make changes if necessary, but it's nice to finally feel comfortable to let my mind wander this far.

I talk to God and Jesus a lot - everyday. I interchange them actually, mostly Jesus I guess if I had to choose, He and I just feel like old friends sitting on a couch sipping a glass of wine together, which, when I have kids in my minivan after school and they are screaming for more Michael Jackson, comes as a breath of fresh air if I can channel in correctly. Anyway, He and I had a good conversation recently about people. I consistently expect people to just think the way I do. It isn't even a conscious decision, but I have been finding myself more aware of this a lot lately. Then, when I realize they don't, even when I try to explain it further, they STILL don't think the same way I do - isn't that just a pisser!!! I get so frustrated. Jesus reminds me to remember when this happens, that my life experience is something few people will ever be able to grasp, and it has given me such a gift of viewing life in such a different way, I can't expect people to get it, most people just don't. The best I can do is express my point of view, and let God do the rest. Wow. That is hard, but I hope if I keep this at the forefront of my brain, it will eventually get easier.

Off to my pre-op appt in Phoenix this afternoon. I'm bringing both kids w/ me - and called the dr office to warn them. I have found that if they are running behind on appts when I arrive with children, amazingly enough - I am just in and out in no time at all. Hmmmm - go figure. :-)

God Bless -

Where is the love????

2010-12-07T10:35:00.000-08:00

So - to bring you up to date - Madeline's procedure last week went GREAT! Well, as great as putting a catheter in a 5 year old can be - she handled it like a trooper and was her brilliant self - she did get serious with me for a moment at the end while we were getting her back into her street clothes 'mom - I don't ever want to do that again'. I told her that I really wished we wouldn't have to and how proud I was of her. We then skipped off to Five & Diner and had a fun lunch together. These moments teach me so much - kids just deal with things as they happen, then when it's over - its over! They don't relish in it or re-tell it a thousand times - or complain (yet!) - what a lesson she has taught me.

Weekend was fun as I had a friend come and visit me from NY - I hadn't seen her in some time and I had a bunch of holiday stuff planned for she and I and the girls as PJ was out of town on his elk hunt. Little did I know she converted to Jehovah's Witness a couple years ago. Needless to say - AWKWARD! But I guess it all worked out fine and we ended up having a fun visit. I think she was ready to go though - I don't think she quite expected the loudness of having little ones - and they were loud. God Bless them. My house and girls are Christmas CRAZY - Christmas threw up in my house - it's obnoxious.

So - I am feeling great - and so happy about my results last week - just been feeling full of hope. Finally got back to the gym today, and maybe it's just today, but I felt like people were looking at me like I just pushed a grandma into the street or something. Weird. Just a 'not so friendly feeling' today in the gym. And, the news is filled with this Elizabeth Edwards story - the jist of it is, her breast cancer has returned and this time is has returned on her liver so she is not seeking any further treatment and according to the vast news reports - she has her family gathered and has weeks to live. Now, let me just say that I have such mixed emotions about this. I'd be lying if I didn't say it spooked me a bit - because it does. But, I've been trying to find out what KIND of breast cancer she has and I can't seem to find out. I also have read that she is physically not in a real good place, so perhaps theresphere isn't an option for her. These news reports are just chuck full of stats on metastatic breast cancer, and I keep reminding myself that you can't apply a statistic, which is a figure based on thousands of people, to an individual - it just isn't matching apples with apples. My instinct upon hearing this this morning was to find an email for her and plead with her to try theresphere - why isn't anyone bringing that up to her?? Then I think of the crap she has had to deal with this past year, and wonder, how much of her time was really able to concentrate on fighting this thing? With a husband who admittedly had an affair and a child with another woman - I can't imagine what that would do to a woman, let alone, the whole frickin world knowing about it. Bottom line, it is impossible to fight this thing without people in your corner, specifically, your family. This story has brought this to the forefront for me today - how blessed I am to have the loving husband I have, the amazing children I have, the most awesome set of parents in the world (that includes you Nancy!), and a community of friends that has reached wider than my wildest dreams. You - you all make it worth the fight, your love and support make it easier for me to do this - what a blessing you all are. I thank God each and everyday for the people He has specifically placed in my path - you are all precious to me and I thank you.

I don't know what the deal was at the gym today - tomorrow I'll wear my t-shirt 'Yes they're fake - my real ones tried to kill me' and see what that stirs up. :-)

God Bless -

I Was In The Pool!!!!!

2010-11-30T21:09:00.000-08:00

Pardon my random Seinfeld reference, but ladies and gentlemen, we have shrinkage. Yes. Had my appt today at CTCA and after a PET, CT and Xray - here is the diagnosis right from the page:

The patient has known hepatic metastases. In the left lobe of the liver near the dome of the diaphragm there is a 2.8cm lesion which is slightly smaller that on the prior study. Previously this measured at least 3.1cm. Currently maximal SUV (this is metabolic activity) as decreased and is 6.04. Previously this measured at least 9.59. The central portion of the lesion appears to be necrotic (this means dead). The second lesion in the right lobe of the liver is vague in outline and appears to be necrotic (this means dead). This has a maximal SUV of 5.03 and previously measured 7.64. This is compatible with response to therapy.

Hallelujah!!! Thank you Jesus! This is the first time since this shit came back that I was headed in the 'shrinking' direction, much less the 'dead' direction. I can't tell you how happy I am. I was so at peace heading into this today - not anxious, not afraid, not stressed. Just at complete peace. It was lovely. Everything went so smoothly today, and this news just brought me to tears. It was nice to have my mom by my side when they told me - how blessed I am to have her by my side just in general. What a gift.

They want to see me again in 30 days where they will do a physical exam and a blood draw then, I think I go through another series of tests the end of Jan. I remember one of my nurses when she was explaining Theresphere to me in the very beginning that I would see some results in 3 weeks but the real results would come in 12 weeks. What a joy though, to know this, and to know I don't have to be on anything for awhile. I think that is what I'm most grateful for, not having to take any drugs. What a Christmas gift I've been given. What a gift.

I have to say something really quick about the Comedy for a Cause benefit put together by my good friends, Travis and Carolyn. This was last Tues night, and I can't even begin to tell you how amazing this was. To see all these amazing people, and to laugh like I haven't laughed in I can't remember when, was such a gift. The $$ raised for us was mind blowing, and I once again am so humbled by how good people are - really, truly, good people. I can't thank all these people enough, especially Trav & Carolyn. I know it's wicked corny, but I keep having that line from Sound of Music go through my head - 'for somewhere in my youth, or childhood - I must have done something good'. Indeed - I must have. Wow.

I have to get up tomorrow and head down to Phx again - this time for my sweet Madeline. She is having some tests done to make sure her kidney function is working properly. Long story short ( and it is a long involved saga) she had a fever with a UTI a couple months back and they want to make sure she is OK sa this is a red flag for possible kidney issues. So here's the kicker - she has to have an ultra sound and a catheter inserted tomorrow. A 5 year old with a catheter. I am just beside myself. I am praying tonight for peace - and that I'll kick into MOM GEAR real quick tomorrow. It just hurts my heart, quite literally, to even entertain the possibility of her getting hurt, or something yukky like this having to happen to her. But - God always shows me the way, and he gives me the words to say when I am at a loss. Please, think of Madeline tomorrow. I told her when she is done we can go anywhere for lunch that she wants. She has picked ice cream. Shocking.

I am really sleepy, so I will try to post more later this week. Thank you for your prayers and thoughts - so much.

To Wear a Bra, or to Not Wear a Bra? - That is the question.

2010-11-21T20:26:00.000-08:00

My last batch of pumpkin bread is in the oven tonight. This year I only had to make 4 batches. My mothers recipe, which I've been making since I can remember, is to die for. It is awesome. Funny, even though my house smells of Thanksgiving to me, my mindset is so completely different this year then in years past. It's not that I'm a Bah Humbug - don't get me wrong - I luuuuuv this time of year - it's just I can't be bothered this year. I used to go crazy making pumpkin bread, cheese logs, chutney, all this traditional stuff for people before the holiday - and this year, I just don't want to. I just want to be with my family on Thanksgiving, perhaps not change out of my pajamas till way late in the day, and just enjoy each other. Can't really be bothered to stress out or cook till the wee hours of the night. Maybe next year I will feel differently, but for now, this just feels right. I've got everything for our dinner, and I will cook that - totally no big deal, but I ordered my pies this year - I never do that. AND I think, now this is kind of embarrassing, I think I'm going to go for the Country Crock refrigerated garlic mashed potatoes too - I have NEVER done that! I just want the easy way out this year, don't want to work that hard. Maybe I'm just tired. Gee, I wonder why.

So I'm feeling good - although I got super tired by the end of this week. Yes, I probably pushed it a bit this week - trying to do too much, but I haven't felt this great in awhile and it feels so good to feel, well, good! My blood counts are great, I have them checked every week until I go back on the 30th for the series of tests to see how the theresphere took - so I am thrilled about that. I had refused the Nulasta shot at CTCA - I hate them - they make me feel like total shit - so I refused it, trusting my blood counts would be fine without it - and YAY! they were! I took Madeline with me this last time and had her watch me get my blood drawn - little 'teachable moment' for her. I overheard her talking about it with PJ during bath time tonight - she was confused at how my blood was coming out into this tube then it just stopped - he explained how our bodies know how to stop the bleeding after applying pressure. Then she said "And Jesus helps heal too dad". He agreed. Pretty cool.

Mentally I think I'm doing ok. Me deciding to move my care to CTCA has done more for me mentally than I anticipated. Not that I have a false sense of hope or anything, I just feel like I have this huge team of people focused on healing me - in a very clinical, focused, professional way. Not that I didn't have that kind of care before, well, actually, I didn't have a team before - I was trying to assemble my own team PLUS deal with this disease which was a nightmare - but - this is just different. The kind of experience I am having through this is what every person diagnosed with cancer deserves. CTCA has given me another layer of fight that I that I didn't know I needed. But I did. I have finally started believing that there is a real possibility that I can beat this thing - finally. Not that I didn't before, but I always had this 'when will the other shoe drop' kind of mentality. I was positive, but subconsciously just waiting for it to drop. Now, just logically looking and what has been done to me medically, it brings me to tears because there is a real and tangible chance that it's gone on my liver. I believe that it is gone. I have to. My spiritual journey supports this in amazing ways. Sometimes I can't even find the words to describe it - just amazing.

We had my father in law for the weekend. We try and have him up here with us a at least a weekend a month - when my stupid cancer doesn't get in the way. He is 61 and has Alzheimer's. He is the sweetest man - and I watch him and think, does he understand what is happening to him? And I don't know what to wish for for the answer to that. I look at myself and think - well, at least I know what is going on and have choices. A lot of people don't get that chance in this life. But then I look at him, and it breaks my heart to think he very well may know that he is changing in his mind, and can't do a damn thing to stop it. Please, keep him in your thoughts and prayers, his name is Paul.

The Comedy for a Cause benefit is coming up on Tues and I am excited and feel weird about it all at the same time. Excited to see these people I haven't seen in years, then weird about people doing something so nice for me. Still so uncomfortable for me to be OK with people doing things for me. But glad that we are there to laugh - because that is what even my therapist at CTCA ordered for me - more laughter. I just hope I don't cry too much (yea right). I thought I cried a lot before I was diagnosed - now? Anything really - I was crying at frickin Michael Jackson 'This Is It' movie tonight. Oy. I should just throw a box of Kleenex in my purse now.

OH! So I've decided to go ahead with the final stage of my reconstruction and my final surgery is on Dec 17th. Now, I thought long and hard about this and I decided to finish because I would like to look down and see something other than a long scar across my new fabulous boobies. (they are fabulous by the way - ask PJ - WOW - totally love them) Now, he is going to make 'tops' (remember, I don't use the N word - total yuk word to me) then he puts these little cap things on that I keep on for a week or so so they don't fall off (not kidding) then I go back in when I'm healed and they tattoo on the areola. Now, because I don't like tops very much, I'm not going to ask him to make mine very big - AND I was thinking of having my areola tattooed on in like a star shape - hmm? I wonder if I'll be able to pick from a book or areolas like an areola mug shot book or something. Hmmmmm. Hey - everything is worth it if you get a good story - and this my friend, will be the best story of this whole reconstruction journey. This time last year I was packing my open wounds from my incisions not healing correctly. Wow. An entire year ago - I can't believe it. So glad though I went this route. I told my plastic surgeon when I was in last week how grateful I was for him and what he has done for me. I told him that I seriously didn't think I wanted to continue after the double infection, that that experience for me was bad, really bad. But I didn't know what a difference it would make to have the reconstruction done - more mentally than anything else. It has given me my sense of femininity back on a level I wasn't even aware of. This disease robs you of all your femininity - from your breasts, to your ovaries, to your hair, to your dignity. To get a little bit of that back feels way better than I thought it would. I told him that what he does matters, and that I was very thankful for him. So true.

Well, my hubby starts his new job tomorrow - we are so excited. I will go and offer to iron his shirt for him, which he will politely decline. He knows better to have me touch an iron. Smart man.

God Bless -

A Proud Card Carrying Member

2010-11-15T20:29:00.000-08:00

So I've acquired quite a collection. Let's see, what cards explaining devices in my body are currently in my wallet - my port, my breast implants, the star closure device used to close my artery for the mapping, and now the 'angio-seal' device used to close my artery for the theresphere procedure. Part of me wants to run down to the airport to see if I set off any alarms - ooooh yea, especially now since you basically get strip searched. Yay. I can't WAIT to travel sometime soon.

So, I have been home sweet home for a week now. My loving husband came down on Sunday and spent the night, then when I went for what I thought was my last treatment on Monday (that would have been day 6) they said all I needed to do was get a flush (that's kinda cleaning my port) and be on my way. GTFOH!!!!! I was so frickin happy, I couldn't believe it. I wish I had known on Sunday that that had been my last treatment - I think I was just so in the 'zone' down there - like subconsciously 'putting my head down and just doin it' kinda thing - that I didn't realize how happy I was to hear that I was actually done. So my awesome nurse flushed me (that sounds wrong) and sent me on my way. I went directly to the chapel, got on my knees and thanked the Lord for seeing me through, and thanking Him that is was over. I was in tears - tears of joy, tears of just complete joy in my heart. Then I went to my room, gave PJ the good news and we got the hell outta there!!!

I came home to the most wonderful of homecomings. My beautiful daughters, they wouldn't leave me alone and I couldn't soak it up any faster. Lots of hugs and kisses. My mom, niece and aunt had taken such good care of my kids - I am so blessed. Now, the rest of last week was pretty painful. I have never experienced such stomach pain in my life - it was awful. I was constipated again (when am I NOT as of late) but this time it was effecting me differently. Anything I ate, almost immediately gave me horrendous stomach cramps. So, I got a little advice from my CTCA friends - get this - if you ever need to get things moving, and moving quickly, here's a sure remedy: warm prune juice with miralax. Yes, disgusting, but sweet Jesus the relief of a lifetime. I won't get any more graphic, let's just say yes, it worked. It really wasn't until this past weekend though, like late Sat and Sunday that I have felt almost completely back to normal. Today especially, I have felt completely awesome - wasn't tired in the middle of the day even, and I can't remember the last time I wasn't tired during the day. Needless to say, I am jumping with joy. Was able to go to the gym today, run a bunch of errands w/ Ginger, just had the best day. Felt like a normal mom.

My hair is still coming out. It's shedding - I don't know what the hell this is about. I haven't had adrymiacin forever now it seems - plus I only had 4 small treatments of it - but it still must be doing it's thing - or the remnants of it are still hanging around. I dunno. Seriously considering the yamica (sp?) thing though - seriously.

Here's some really great news that I can finally share - my husband got a new job. Can you believe it? Now - if THIS isn't God, I don't know what is - because he got this amazing new job, working for an amazing local company, at the pay we could afford. We had to take a cut, but we really think it is WAY worth it - on so many levels. It all went down in a week - seriously, 1 week and he landed the job. First of all, I knew my husband was amazing, and I knew that other people would think he was amazing too if they could only meet him. We all know that if someone tells you you're a piece of shit long enough, you start to believe it - and that is what his current employer had done to him over the years. Just no pleasing them. His current job did though, allow him to work from home, which helped us so much over the last year and 1/2 with me going through these surgeries and chemo treatments. What a blessing I was able to basically have my husband close if I needed him. For that, we will be ever grateful. But - WE ARE SO EXCITED TO MOVE ON!!!!! Yay.

Ya know, when PJ and I decided he was going to look elsewhere - I told him that I had this theory - that we just needed to move in a direction, the direction we were being told to move, we just needed to put the word out there about him, send a resume, make a phone call - get the ball rolling. That we were the kind of people where once we started something, everything else would fall into place - just move in a direction, and let God take care of the rest. He looked at me like I was nuts - but then once this all went down, I told him to rise above this situation and look at it from a birds eye view - things just don't happen like that - not at all. Now, I'm not explaining this for this big 'I told you so'moment - I'm explaining this because here I was, all passionate about God revealing Himself in this job scenario with my hubby because he listened to the signs and moved in a direction that he felt God wanted him to - and God took care of the rest - then I realized that I moved towards CTCA and look what happened to me? The same thing - how amazing. All I did was pick up the phone and call and the rest, I believe, God has taken care of. I know the odds are against me - but you know what? I know I can beat the odds - people do it all the time - and if anything weird or out of the ordinary is going to happen to anyone, it's going to be me. That's just the way I roll.

OK - I think I've rambled on enough this evening. I guess I would just encourage everyone to just move - move in some direction that feels right in your gut and see what happens. We can't sit and wait for things to work for us, we have to play an active part. Maybe that's why He gave us free will - to see if we were listening or not.

God Bless -

Glowing in Goodyear

2010-11-06T22:22:00.000-07:00

It's a quiet evening here in lovely Goodyear AZ. I am on day 4 today, only 2 more to go. I know they told me that the radiation was not at a dangerous level as these little pellets emit time release radiation onto my tumor over 6 days, but I kinda like the idea of me having a proverbial glow. So I will wallow in that for a bit. A mental picture of me, glowing in the window this night from CTCA in Goodyear, AZ. Kinda cool.

Today I spent time with a really great friend whom I've known since we were little kids - she drove all the way out here to see me and spend time just chatting. We are just those kinds of friends where we could just pick up where we left off - I think we saw each other just about a year ago, but it was like a day hadn't passed. Really great. Then she sat through infusion with me, took off afterwards than my brother-in-law came and spent time w. me and we had dinner. It's been such a blessing over these past few days to just soak in people. To have at length conversations with people, I can't remember the last time I was able to do this. It has been just awesome. To sit and simply exchange thoughts, feeling, laughs, cries, each other. Pretty frickin cool. It has kept me from being depressed - not from the cancer thing, mostly from not being with my girls and hubby. I think I gained a new sense of hope, over time, when I started coming here to CTCA. Not because of the cheery commercials, although I think those are very relevant, but just from my experience. I didn't know what to expect when I came here - I didn't know about the theresphere procedure, that was something I learned about when they sent me the initial material of what they do here. When I read it, I thought, wow - that makes sense, maybe they'll recommend that. I never suggested a thing - just let them go through everything about me and let them do their thing. Everyone approached me with a very focused nature - which I appreciated so much. Not a lot of BS or 'false hope' like some have criticized, but just focused attention. When they recommended the theresphere treatment, I was excited - not knowing that I would then need to go through a process simply to qualify as a candidate for this protocol. Again, success. Each of these experiences just built on each other that has brought me to a place of such peace, and hope, and contentment. It is hard to explain. To sit here and look back and see the path that has lead me here, it is so clear to me that God has been by my side, gently guiding me along the entire time. I do not sit and wait for Him to do something, I listen for Him, and He tells me which way to go. But you gotta have your God ears on, and sometimes, that is the hardest part. We are wired as humans to have OUR ears on only, and we fight God because sometimes He leads us where we don't want to go, or are afraid, or doesn't fall in line with OUR plan. Experiences in this life WE decide are 'good' or 'bad' when actually, they just 'are'. We miss the importance of experience in this life because we are so busy labeling it we miss the lesson, or the direction, or the meaning. So hard to do - but I'm trying real hard to have my God ears on more and more. Morning seems to be the best time for these ears for me - perhaps because I'm less clouded when I first wake up - who knows. It's working, and it's pretty frickin cool.

I'm feeling the 'chemo brain' which, I had forgotten about. It's funny, I'll find myself just peering, as if I a actually trying to see through something - that's how it feels. Crazy right? And my belly is feeling it big time now. It's the premeds mostly, steroids and anti nausea stuff - I am taking miralax and this lovely Yogi Tea called 'Get Regular' (I kid you not) that has these little sayings stapled onto the end of the tea bag. This evenings reads: 'Wisdom Becomes Knowledge When It Is Personal Experience'. Hmmm. yea. duh. I just really need to personally experience a poop - so let's get REGULAR please!

PJ comes tomorrow, and I am so excited to see him. Then I get to go home on Monday. But do not be fooled - I am relishing each moment here, focusing on this procedure to kill this shit once and for all. I am confident this is working, I can feel it working - physically and spiritually - it's pretty amazing. I am so blessed to have found this place, these doctors, this experience. How blessed I am that all of this came together for this to actually happen for me. Truly someone watching over me, taking care of me and my family, lovin on me. Doesn't get any better than that.

God Bless -

Chemo has given me man hands.

2010-11-04T21:32:00.000-07:00

This is probably just the way my face and hand appears in this mirror in my room, but I totally feel like I have man hands. Weird.

So my infusion yesterday went fine - a little overwhelming and confusing - kind of a paperwork nightmare while they switched me from in patient to out patient - but around like, 4:30 all seemed to be right with the chemo world, and I was on my way with my first infusion. Unfortunately, I'm getting the yukky steroids to start with, which just make my face all flush and uncomfortable - but oh well. This too shall pass. They hooked me up with my little nylon bag to carry around with me, which is fine. Weird, but fine. My first chemo infusion went fine - my belly was a bit upset last night, but all settled down by around 10 or so. It felt good to get up to my room, shower (THAT was entertaining) and climbing into bed with my chemo pack in the place where my husband would normally live.

Today I was blessed to have my friends from my church come down and have lunch with me, then my brother in law showed up right when I went into infusion again for the day so I had a lot of company that it went by really fast. Tomorrow I have my girlfriends driving down for a morning visit then a friend of my moms coming by in the afternoon then my brother in law coming for dinner. Wow. This is so very cool I actually get to spend time with these people without interruption. How blessed am I that I have this support system ready and willing to come down here to see me and spend time with me. They are filling my days with love and laughter and not allowing me to wallow in the yukky side of why I am here. Truly Gods hand at work in my life, yet again. I'm going to be here till Monday - not Sunday like I had originally been told, but that's ok. I'm hoping PJ can maybe come back down on Sunday, work from here on Monday then take me home after my infusion. I should be done and ready to go home by that point. Can't wait. I miss my girls so much, my heart hurts. We got to oovoo today and it felt so good to see them, Ginger actually asked PJ if she could hug me through the computer. My heart just sank. Madeline is going on her first slumber party with a schoolmate of her tomorrow, so I was drilling my mom to get her little bag packed and trying to play my mom role from all the way down here. Madeline needs some fun time - and she seems really ready to do this, I'm so proud of her. Bummer that I am going to miss the experience live and in person, but so glad she gets to do this.

Well, I'm actually feeling a bit nauseous right now, so I think I am going to take a compazine and lay down. Got this way a bit this morning too - just rested and it all passed. That is soooo hard to do - because I have a list in my head of things I want to get done, but I must listen to my body and give it what it needs. Especially now. This is the place to do it.

Thank you all for your kind words, your prayers, your energy - I feel it all and it is helping me. 2 down, 4 more to go. Just keep swimming, just keep swimming....

God Bless-

My Little Theresphere Vacation

2010-11-03T11:47:00.000-07:00

So - procedure went real well yesterday. In fact, to quote one of the nurses and theresphere assistants - 'that was the smoothest, quickest therasphere I've ever seen done'. Woo Hoo!!!! I seemed to 'feel' much more of this procedure than the last oddly enough - but I make it through. I also had to lay flat for longer afterwards - completely flat - for 4 1/2 hours. I was becoming quasi cancer bitch here in the hospital room - until the nurse kindly suggested that I get an adivan to help me relax. That would have been fine but they came in to finally give it to me at 2pm and I was allowed to get up at 2:30. Soooo - I got up, went pee, then went to bed and slept for 4 hours, no joke. Crazy. Today I feel fine, my right leg which is the leg they went in on, feels kind of 'bruised' inside but they say that that is normal. They have hooked me up to the Leucovorin which I will stay hooked up to for 6 days straight. Right now it's on a very, very slow drip - 24 hours actually. So I can't switch to the 'pump' until this is done. That will be around 4pm today - so needless to say, I'm going a bit stir crazy. Really, really trying to move with the cheese. Now they told me I won't be able to be discharged until Monday rather than Sunday. OK. I know that this is exactly where I'm supposed to be, this is exactly what I needed to have done, and I need to trust that they know what is best for me - and do what they tell me to do. PJ had to leave to get back home just a bit ago, it was hard to see him leave, but the girls really need him at home and I feel better with them knowing that at least one of us is there. I miss him already, and really miss my girls. How blessed I am that family has stepped in to help me with them - they don't know it consciously, but it is nice to have family there with them - different, more familiar energy. Good.

So I guess around 4pm today I will be discharged from inpatient - and go right into infusion for my first round of chemo drug called floxuridine. I will get premeds then the drug - not sure how long this is going to take, if I'll be getting this at the same time every day, what the side effects I will experience, don't know. Just trying once again, move with the cheese Dina!!! I am reminded how much I like to plan and know what is coming up - I need to just give that up and move where I'm told. I've already said no to some drugs they had on my schedule - they had scheduled a nulasta shot for me when I leave, which I promptly declined. They will be doing weekly blood counts on me so they will send me home with orders I can take to a local lab and have them draw blood, run counts then send it to my oncologist here. If the first one comes back showing I need a boost - then fine, I'll do the nulasta, but I am electing not to do this prophylactically. I'm trusting my body to behave the way it has in the past, and have perfect blood counts like always. My next appt here will be on Nov 30th where they will do a chest xray, PET and CT scan and I'll meet with both oncologist - the theraspere oncologist and my general oncologist. We'll see the results then. I do remember them saying that they sometimes show better results in 12 weeks, but we'll see. I'm ready fr results either way.

Sad to say I am on dexamethasone right now, a steroid I'm familiar with as I had with my prior chemo, to help manage internally inflammation. Can't stand this stuff - makes me warn and gives me what I like to call the Carl Mauldin nose. All red and chewed on looking. But overall I feel good. Finally starting to poop - so feeling even better than before.

My hair loss has dwindled but continues. Mostly on the top of my head, so I figure since I'm so tall, if I just never sit or bend down, no one will ever know! PJ says I should start wearing a yamica - but I thought perhaps the congregation at our church would find that confusing. They wouldn't question me, this is a Methodist church, whereas the Lutheran church there would probably be alarms that went off when I walked through the door. (kidding) I'll just start wearing my new hat that says 'Wish You Were Hair".

I have to say I am ever reminded of how much I truly love my husband. He sits here in my hospital room and just watches me sleep. He stays with me all morning, all day, he sits in the corner of my room in dimly lit light till 2am working because he doesn't want anyone to fall by the wayside, even his job and his customers. I really connected to the feeling of the safety in just knowing he was here - such comfort, such love. I am so lucky to have found him - he takes such good care of me. Thank you Lord, for putting us in each others paths, and giving us the sense enough to notice each other.

The pain management doc just paid me a visit - and had to ask me if I was the patient. He said I look so good, he didn't know if I was the patient or now. Now, I'll take that compliment over and over.

I'll check in tonight probably to give the rundown of the rest of the day. Move with the cheese Dina - with a smile and skip in your step. I'll make sure I ask them for a chemo pump that can withstand skipping. If you come to visit, just look for the 6 ', balding, skipping cancer patient with a chemo pump. Now there's a frickin Hallmark card, eh?

God Bless -

Let's Get Radiated!!!!!

2010-11-02T00:23:00.000-07:00

So, I have this picture collage on my mirror on my side of our bathroom that contains pictures of me - pre cancer - pre Ginger even - when I was at my ideal weight. This is to serve as a motivator to me to lose these unwanted pounds. I have been looking at this for a couple moths now - and I look at this person in these pictures and find it hard to remember who exactly she was. I mean, I remember thinking I was a pretty good person then, but now, looking back, I'm not sure how accurate that statement or feeling really was. In retrospect I mean - which, I understand, not everyone gets the opportunity to do this. Ironically, I miss her. I don't miss who I 'was', but in a very shallow way, I miss how I felt, how I looked. And I know, I won't look like that again. I may get close - with will and determination, which to be honest, I sometimes lack for long periods of time - but I will never look exactly the same. Frustrating, and enlightening, all at the same time.

So tomorrow morning is the big day. I go in at 7:45 am for my therasphere procedure - and I'm ready. I've been fighting a sinus/chest thing the past 2 days, so I'm hoping that doesn't cause any major problems, wish I felt a bit more up to par, but excited nonetheless. Then I think I will be hooked up with the one drug that I will stay on for 6 days straight then at some point have my first infusion of the chemo drug. Little nervous about that - wondering how I will react. To be honest, I'm going into this thinking I'm going to be just fine. Maybe tired, but lately, I'm pretty much always tired, so I'm thinking of this as like a little mini cancer vacation. Get to hang out at CTCA for a mere 6 days and see what's going down in Goodyear. Woo Hoo!

Thank you for your thoughts, your prayers, your good wishes. Now - let's go kick this tumor on it's ass and thank the Lord for a cancer free Dina, eh?

Night Night - and God Bless -

The Cancer Song

2010-10-28T21:19:00.000-07:00

So I am speaking with my little Madeline on our way home from school yesterday when I explain to her that her Mema (grandma) has cancer too - but in her lungs. We chatted about this for awhile, since I recently explained how her Gma Nellie has the same thing, when she blurts out with this: 'Cancer Cancer Do Not Stay! Cancer Cancer Go Away!'. She obviously took it upon herself to replace 'rain' with 'cancer' - all on her own. I tearfully complimented her creativeness - and now she sings it quite alot. Pretty deep for a 5 year old.

I'm feeling very hopeful about my upcoming procedure. A little chaotic in my brain as I plan to be gone for 6 days, but good. I've got people lined up to visit me already - so thank you!!! Speaking of visiting - our trip to CA was a long drive, but so worth it. I'm so glad we went - and I'm feeling so helpless now. I'm feeling that a lot lately come to think of it. Wish we were closer to visit her more - to be around PJ's family more - it was really lovely to hang around with them. They've got some pretty heavy shit coming up too here next week - which reminds me we ALL have shit we're going through, right? I don't know if it's my age, or what, but it just seems like we all are dealing with way heavier shit than people our age used to have to deal with. I mean, maybe I'm being naive - I don't know. But it just seems like the people I am surrounded with, my family and close friends, have an awful lot of serious heavy stuff on their plates as of late. Not sure if it is a test of faith or what, but is seems damned coincidental. In any case, I wish we could be there to help more. My mom is going through some challenges now too with her cancer recurrence, and I just wish I could fix it. I want to fix it all. My stupid cancer is keeping me from being 100% there for others, and that just plain pisses me off. I remember talking with my Pastor early on in my diagnosis about how having people help me was something I was not real good at, and she explained to me it was was 'season to receive'. I get that - I got it. But enough already. It is clearly other people's time around me to receive, receive from me, and I just can't seem to get to everyone. I know, it's not about me - but it's hard to be Christ hands and feet upon this earth when I'm sitting in CTCA for 6 days. But, maybe that's exactly where I'm supposed to be. Maybe we don't get to choose, much less be aware of the people we minister to. The people we come across on this earth that get something from us by simply watching us, overhearing us, witness us show God's love to others on this earth. Guess I needed reminded of that. I just want to take care of my mom. She deserves that, and I can't take care of her in the way that I want to.

On a lighter note, my fabulous friends in Phoenix have planned something rather awesome.
They are doing a benefit for me Nov 23rd called 'Comedy for a Cause' at the Improv in Tempe. Way - way - way back when, I headed up the house improv group there, and I can't believe how many people are showing up, donating their time and awesome talent, to come out and do some stand up for me. They've got a silent auction going, and it's going to be so frickin awesome - I am humbled by their generous spirit in putting this together. They have a Facebook page for it as well, Dina Mountcastle Benefit 'Comedy for a Cause' for anyone wanting details or to just be nosey and poke around. This just baffles my mind - that people, some of which I haven't seen in like, 20 years, are showing up for me in this manner. With everything that is going on in this world, especially now, to see the human spirit rise in this manner, and for me? For anyone? It fills my heart like I am unable to explain. We do not realize how many people we touch in this life - and I was reminded this past weekend in CA that the 'ripple effect' we have with each other on this earth is very, very powerful. What one person, one situation can put into motion - just by showing up for someone, by calling, by emailing, by frickin just smiling at someone, is mind boggling. We make a difference. Everyday we do.

Alright, enough heavy shit for this evening. I am off to bed. PJ and I have our first Parent Teacher Conference tomorrow morning for Madeline and I am so eager to hear what she has to say. I will finish off my evening here with a good episode of 'Hoarding' - embarrased to say that I am addicted to this show!!!!!

God Bless -

Nothing like a 10 1/2 hour drive.....

2010-10-24T16:05:00.001-07:00

So here we are in Clovis, CA. PJ's grandma took a drastic right turn into a more medically assisted home, and we thought we better get here while we had the allotted time to do so. We arrived about 4am on Sat morning - and considering it took us 10 1/2 hours to get here, the girls really did quite well. Ginger had had quite enough of her car seat about 6 hours in, and to tell you the truth, I didn't blame her. I ended up in the back seat of the van holding her while she slept for the remainder of the trip. So sweet. We went and saw grandma yesterday and I have to say, she is still has her sharp moments, she is a hoot. We got a chance to see her, chat with her, the girls saw her and Madeline colored some pictures for her - it was really nice. It's also been so great to see PJ's side of the family - makes me want to live closer to them. How blessed I am to have married into a family that is so awesome - they are just good people. The kind of people you want to hang with - they are certainly on 'the bus' if you catch my drift. PJ's cousin has 2 little girls around our girls ages so they have just been in hog heaven. We were getting ready last night to go to a little Halloween thingy at the local zoo for the kids, literally getting in the car to go, when Ginger had another one of her seizures. This one was not as dramatic as her others, but a seizure nonetheless. I can totally get through them now, needed a little help as I was literally talking her through it while walking around PJ's cousins front yard, but once I've got her 'back' I still cry in just fear. I hate that she goes through this, and just pray that this will stop one day for her. No fever with this one, so I am at a total loss. My gut is telling me that she had a long day with the drive and all, not a lot of food, not a lot to drink, and her body just said "stop! we are stopping now because I need sleep!' and that she did - slept for 13 hours straight. You'd never know it happened looking at her this morning. Madeline went ahead with PJ's cousin and their beautiful family, and she even got to sleep over at their house, which was very cool for her. PJ and I were able to take Ginger back to the hotel and nurse her back to health. What a ride. What a wild ride. This parenting thing is quite a ride. I am reminded once again how I was picked, out of many many others mommy's out there, picked specifically to be Ginger and Madeline's mommy. I know them like no other, I can read them like no one else can, and that 'gut' feeling I get about them, the feeling that came to me yesterday that told me moments before the seizure that she was going to have one, is a gift from God. These moments are reminders to us of why were are placed on this earth. Brings to mind for me the message from Pastor George's sermon last Sunday - he said "consider this - we are not human beings on a spiritual journey, we are spirit beings on a human journey". Considering this possibility can completely change the way you look at people, look at EVERYONE. It's like you see the spirit inside of them, and not their human form. I know, heavy for a Sunday afternoon, but I needed to share. Try it out next time your just walking down the street or through a store and look at other people with this in mind. Look at your children with this in mind - frickin mind blowing.

I'm feeling fine, was having some upset tummy issues on Thurs and Fri, which they said would happen considering the 'coils' they placed in me during the 'mapping' but that has passed (thank God) and I'm feeling much better now. OH - I totally forgot to mention this about the mapping procedure - when they wheeled me in for the procedure, I see this young man (yes, I said 'young man' oy) who took my xray pics a couple weeks prior - he looks like he's maybe 15 years old, total skater look to him, and he is the one who asked me if I wouldn't mind listening to Led Zepplin during the procedure. Once I was placed on the OR table, he pulls up my hospital gown and shows a look of disgust when he sees I still have my underwear still on. I tell him that I asked and was told it was OK (another problem with my scary intake nurse) so one of the female nurses helps me take them off, then, he is the one to 'shave my groin area'. Ok - I am going to sound a LOT naive here, but I think I thought my groin area was on my thigh, why? I have no idea. Well, it's not. It's in your bikini area, and now I have this prepubescent guy shaving my bird. Then, he just leaves - went to get something I guess, so I say out loud "and here I am! my bird just hanging out for anyone to see!". Just another layer of 'what else can I please experience to add to my cancer stand up act' I suppose. Oy. I would love to say I will get a bikini wax before my therasphere procedure, just to impress them, but I've had one of those before and no frickin way - that was more painful than anything I've ever experienced in my life. No way.

Well, my family is napping now on our hotel beds, looking so beautiful and peaceful - I watch them and thank God for my life, my family, my extended family, and the fact that we are visiting here right now. I'm so thankful for PJ's grandma, what she has taught me, what she means to PJ and his family. She has no idea the good she continues to do by bringing this family together. Just by being on this planet, people accomplish so much without ever knowing it. Spirits on a human journey. Way cool.

God Bless -

I've officially been MAPPED

2010-10-19T20:31:00.000-07:00

Well, it's official. I went through the mapping today and it was a success. YAY! Very strange and interesting procedure though. I would be lying if I didn't say I was nervous - I was. There are many cool things about CTCA, but one for sure is they are always on time. So arriving and going right into prep was refreshing. Also gave me no time at all to process things - which isn't all bad either. My prep nurse decided to train a new nurse on me while putting in my IV and I've decided, I'm not going to be so nice about this anymore. This was the most painful part of the whole thing, this trainee poking me - they ended up putting it in my wrist. I've been poked a lot - a LOT - this was the only time I almost started crying it was that bad. PJ kind of reprimanded me for 'being too nice' about this stuff, and ya know, he's right. I'm not going to let anyone practice on me - they can practice on someone else. In any case, IV was put in, my nurse was way too chit chatty with me - but I was quickly on my way. As I was wheeled in, one of the nurses said 'what kind of music do you want to listen to - rock, jazz, blues - your choice'. So, we had Led Zepplin playing throughout the whole procedure - very cool. I was also awake through it, sedated cuz I couldn't feel anything, so it was kinda like I was awake, but didn't care at all. It took about an hour, they go in to my femoral artery on the right side with this camera catheter thingy, take tons of pictures, put in the coils to block blood flow to my stomach and bowels, then once I'm done I'm whisked off to get a PET scan for them to take more pics of me with they dye in me to see where it all goes to make sure they know where everything will go when the y do the real thing. Amazing. Then I just had to lay there for another hour or so. They put in this star thingy to plug up the artery, so to make sure that all that heals, I need to lay still for a couple hours. Uncomfortable to lay flat on your back for that long, but this too shall pass. It really went just perfectly, I was so relieved. I think I was most nervous because I didn't know what to expect - didn't know what it was going to be like. But as soon as I found myself overwhelmed with fear or anxiety, I would just put all my trust in the Lord and turn all my fear over to him, and it totally lifted it right off my heart. Amazing.

So my official procedure will be on Nov 2nd - exactly 2 weeks from today. I'm so excited. Bummed to know I have to spend an entire week away from home - but, I'll do it and get it done and overwith. My mother and niece watched my kids for me today, and they will return again with my aunt from Los Angeles when I go in on the 2nd. How blessed I am to have friends and family to step up for me like this - I can't even begin to express how thankful I am to have such a wonderful community of friends and family that help me and make all this work for me. I'm going to be up for visits from anyone caring to visit me in Goodyear for those 6 days - PJ will not be able to stay with me the whole time, so if anyone is up for a visit, amazing lunch or dinner - please let me know. I'm game.

I really wanted to write more, but I am literally falling asleep as I'm writing this. Been a long day with a whole lot going on. I'll write more tomorrow, just wanted to bring everyone up to speed. Thank you friends, thank you family, thank you God for continually holding me through this journey. Hand in hand we continue to go. Oh - wanted to share a pic of my fabulous kids from this past weekend. They are just frickin awesome.

God Bless -

To Shave or Not To Shave, That is the Question....

2010-10-12T22:32:00.001-07:00

My hair just keeps thinning out. It's been over a month since my last Adrimyacin push, yet, it continues to fall. I guess I'm lucky that I have a lot of hair anyway. My awesome hairdresser recently told me 'now Dina, you have as much hair as everybody else'. I went to her to see what she could do with this, because obviously growing it out isn't going quite as I had planned. She cut it short again and I have to admit, it helped a lot. But it still falls out. The drain in my shower has this light covering of hair each time I shower. I've actually not showered for a day thinking 'maybe if I don't shower and wash it, it will stay in!'. Silly. I am hoping that if I wait long enough, it will stop thinning then start growing back before it is really noticeable. Now that I'm typing this I feel really silly. Am I really spending this much time talking and thinking about my stupid hair? I've done this once already - and I elected to just frickin shave my head when it first started coming out. This time, I just don't want to. My poor bathroom is just coated with hair. It totally affects my mood when I have to start my day putting handfuls of hair in the trash can. I wish this didn't matter to me so much, but it does. I've spoken to Madeline about it - and she is just so matter of fact about it. She says 'this cancer just needs to go away mom! cancer is NOT good!' Which of course brings me to tears that she knows this at age 5 - then she asks me why I'm crying and I tell her that sometimes when mommy is so full of love for her, I get so happy that I cry. She smiles and hugs me. This whole conversation occurred the other day as I was getting her out of the shower. So perfect.

Fall break has been lovely. Getting up on our schedule. I did have a run in with a rude employee of the YMCA where I work out - and I noticed something about myself that I found very interesting. Anyone who know me knows, when someone is disrespectful or rude to me, it is all I can do to not rip that person a new A hole. Seriously, I don't tolerate people like this very well AT ALL. So when this situation presented itself to me yesterday, I found myself going to that same place. I started getting all worked up inside, getting very confrontational, maybe a little bead of sweat or two - you get it. Then, something came out of my mouth that I swear I don't remember giving myself permission to say. I said "listen, I don't know what has happened here, but if I have come across rude and caused you to act this way, then I apologize, that was not my intent". wha???? Dina - back down? Dina - take the high road? Who the hell was this person talking? Now, this fell upon deaf ears, but the thoughts I HAD in my head did not come out, this did. Weird. I thought about this throughout my workout, and I think I realized, we, the collective women 'we', suck it up so much sometimes, we don't vent our frustration or anger or disappointments so often, that when the poor uneducated soul at the front desk of the Y gives us the stink eye, we totally unload all this shit on them. It all comes pouring out - like we needed an excuse to let it out, and this was it. I didn't do it this time, which was good. But I realized that I need to let out this frustration or whatever I have been feeling before it gets to this point. If something is bothering me, I'm going to say it. If I get hurt my something or someone - I'm going to tell them. It is NOT easy - it is easier to take down the Y employee - but I am seriously going to start working on this. Thank you - Miss Uneducated YMCA Employee for the self-enlightenment. (hey, I'm not losing my sarcasm - that would be pushing it)

I've had a great time hanging out with my kids. We went and painted pottery today - total blast. Total mess, but a total blast. Then grocery shopping, lunch - the normal stuff. So cool.

I spoke to CTCA about how I feel weird not to be taking anything now, and they said they need me really healthy for this procedure - so to chill and not worry about it. I breathed a cautious and semi relieved breath of fresh air - and I am trying to just embrace the fact that for the next month or so, I'm not going to be on any drug of any kind. I mean, I will be on chemo right after the procedure, but until that point, I'm really enjoying not being on anything. That hasn't happened since I was diagnosed - and that was almost 2 years ago. Wow. Isn't THAT crazy. I just want, so badly, to have an opportunity to have my life back from this disease. As much as I try to conduct my life and raise my kids and be a wife and mother and member of my community, I would be lying if I didn't say that I'm trying to be all of these things AROUND cancer treatment - and that is just getting old and tiring and frustrating. I am being realistic about this upcoming procedure. But my hope is, this therasphere will blow this metastatic disease out of my liver, then I will be able to control the disease with another estrogen blocker from coming back anywhere else. That is my vision, that is what I am holding onto - because that is what makes logical sense to me. Is cancer logical? No. But they know and awful lot about my kind of breast cancer, so I know I have that on my side.

I hope I'm not sounding all dark and serious, I'm not in a dark place at all anymore - thank you Jesus. Where I am mentally now is like night and day compared to where I was a month ago. It was difficult for me to switch my care to CTCA, very difficult. But I now know that I needed to move in the direction that felt right in my gut, and this just feels right. I sacrifice me a lot in this life over the guilt I feel for others, and this just couldn't be one of those times. There is way to much at stake here for me. I qualified for this protocol for a reason, I know this. I am where I am today for a reason, and I was where I was for a reason as well. I have no regrets with where I was, or where I'm headed. No regrets at all. I have felt led all the way. However, I also believe that we need to hear Gods voice (or our gut feeling, whatever you want to call it) and follow that lead, give it that push, then everything falls into place. It's amazing what one move on our part can cause - just one simple phone call can send us into a completely different direction. Just one move - sometimes that's all it takes. Sometimes that one move is the hardest to make of all. But that is where trust comes in, trust God, trust your gut.

God Bless -

Up For Mapping anyone?

2010-10-10T20:11:00.001-07:00

Wow - I can't believe how long it's been since I posted. I think my trip this past week to Phx has taken me this long to recover from. I went down on Wed of last week for a couple things actually - had an appt in the am with my plastic to review my healing status - seems my left boob is still hanging onto scar tissue for dear life, although he said it is dropping. He also said that I don't see this because I see it every day, but to trust him, it was dropping. OK. I just see that one is higher than the other - wouldn't it figure. AND it's the left one, the one that was FINE!! The irony, really. In any case, they are way more comfortable than the expanders, I'm just glad to have those out and these squishies in. He said it really takes 3 months for them to settle in correctly, so we'll see what time brings me. He did say that if the scar tissue didn't release he could always go back in when he does the final piece of reconstruction. Now, remember, I don't use the "N" word (top of the boob word) because it totally sceeves me out - and to be honest, I don't really know if I want the final piece of reconstruction done - part of me is just fine like this. Kinda tired of the whole thing ya know? But I am morbidly curious to see how this works - that is what is driving me to complete this process more than anything - not my need for 'tops' because, hating that word my entire life, it's really kinda cool to not have to worry about such things in t-shirts or anything. We'll see how I feel when that time comes around. My curiosity may just get the better of me - even though I'm told I have to walk around with 'caps' on for a time - to make sure the 'tops' he forms out of scar tissue don't fall off or anything - why couldn't they just take some pencil erasers and hot glue them on? I can't feel anything there anyway. I could do that myself, it would be way cheaper. Hmmmmmm...

So my next appt on Wed was at CTCA and I was caught in that horrendous storm on the way there - I now know what the term 'biblical proportions' actually looks like - cuz that storm was of such - frightening and cool all at the same time. Made it safe and sound and met with the radiologist as he needed to give me his stamp of approval for this whole theresphere protocol as well. He was awesome, and did indeed pass me through to the procedure. Then I went and had a meeting with my oncologist, got a blood draw, ran over to imaging to get a quick chest xray, then back for my Zometa treatment. I'm still getting accustomed to this new team, they are very nice - some have 'the face' on, and some are genuinely nice - I think I'm just one of those rare people who know the difference - but it is all good. I also think it is difficult for another facility to just pick up where someone else left off in their treatment - trying to make their way through the paperwork into what THEY know as routine is a process, in short, I'm trying to move with the cheese here. So far so good, just frustrating a times, for them as well I'm sure.

Ended up crashing at my moms place Wed night as I didn't get back to her place to pick up Ginger till after 6pm - and we weren't sure what the weather would bring me for the drive back home up north, so I stayed there. Needless to say, it was a long day. Good news is, I'm officially scheduled for my 'mapping' procedure. It will be on Tues the 19th of Oct at 8am. This is a way bigger deal than the actual procedure, because they will be doing a test run with injected dye to see if the procedure will actually work, or what they need to do to make sure it will work. Let's just pray for the mapping to reveal everything they need it to to make this work. C'mon body - cooperate. I feel good about this, really good. I am actually hopeful, which I haven't been in awhile.

I did put a call into my advocate to discuss the fact that I'm not taking anything right now and that feels really strange. Since this all started, I've always been on something. Chemo, estrogen blocker, something. Now? Nothing. Doesn't feel right. I mean, logically, I know we are focused on my liver - but what about the rest of the cancer? I need to protect my bones still and I know I just had a Zometa treatment, but that isn't a 'cancer fighter' that's more of a 'bone strengthener' - so I want to discuss this. I just saw an article about a drug called Faslodex for women with advanced breast cancer. This is an estrogen blocker that has just been approved by the FDA for a higher daily dose and has had, so far, pretty positive results. So I'm going to ask about it. We'll see. Don't know if I can be taking this when this procedure is on the horizon, so I thought I'd ask.

I've been working really hard at just being present. Sometimes remembering to do that is just the furthest thing from my mind, so I've had to really focus on being better at this and it is working. Hugging my kids, kissing my husband, talking with my mom, all of these things are so frickin awesome - they are even more awesome if I can be aware enough to be in the moment with them - 100%. I know the last couple of months, my brain has been so stuck in the 'what if's' and the 'why me's' - when this happens, I lose out on the present moments - and those moments are so amazing. I am so blessed to have the family I have - to have the friends I have - to have the community I have - to have the life I have. Believe it or not - watching my kids faces last weekend while they watched Storytime Live at Tims Toyota Center was probably the coolest thing I've experienced in quite a long time. Normally, I would have been wrapped up mentally in 'what time are we leaving, what are we going to do for dinner, what time are they actually going to get to bed, what time are we going to get home, this is running later that I thought' blah blah blah. I would have missed it completely - but not now. This state of present consciousness is not habit - it's work - and takes a hell of a lot of self reminding, but I'm slowly disciplining myself to do this, and it's extremely rewarding. At the same time, I am constantly giving thanks to the Lord above for all the wonderful things I have in my life, everyday. Whenever I start feeling bad, I try to make myself smile and give thanks, and my feeling eventually does catch up. Again, practice. Practice makes perfect.

Well - I'm off to tend to my feet. They have not completely healed from the Xeloda yet, and are hurting today so I'm going to soak them, put on some cream and some soft booties and rest. Yesterday was a day full of awesome family errands and soccer games and yard work - today I am tired, and just, well, out of it. Hard to describe, but I'm just out of sorts today, can't quite pinpoint it - and I can't even use tired as an excuse because my husband gave me a nap today - so who knows. We are on fall break now and I'm actually going to get to the gym tomorrow. Haven't been in over a week and it's driving me crazy. Looking forward to a week of life on OUR schedule and not school schedule. Yay!!!

Have a great week all - God Bless.

Wired for Cancer Killin

2010-09-30T21:48:00.000-07:00

So my trip down to CTCA yesterday went fine. It was such a long day though - and my little Ginger was such a trooper. I literally left the house w/ her at 7:15 am and we didn't get back home here till 5pm - then I had to drop Ginger off pick up Madeline and take her to the dr to see what was wrong with her - and she and I didn't get home till 7:30pm. Oy. There were a few moments at the end of this for me where I literally wanted to scream, but I didn't. Raise my voice? My yes, but yell - no. Oy. Madeline is doing just fine today (of course! I went to the dr!) and thankfully is finally going back to school tomorrow.

So, here's the skinny on my upcoming treatment. The dr I ended up seeing was NOT a surgeon, he is a oncologist but he is the oncologist that developed the protocol for thereasphere. Shut the front door!! Get out!!! Yes, so he was a very gentle man who I could tell spoke levels upon levels above my intelligence, but he knew enough at the end to let me know that his nurse would come in and explain everything again to me - which relieved me a bit too. He examined me - examined my liver. I've never had a liver examination before, but this means he basically poked around my right gut area, then drew on me with a purple marker and his wife who is also his nurse (talk about fringe benefits) wrote down some mathematical figures he threw out. Then he sat with me, asked me a couple questions, looked over my blood work and told me that I did fit the parameters for this protocol. Yay! So, his nurse comes in and starts to explain the procedure to me in great detail and I'm sitting there thinking to myself, 'just listen to everything and write down what you need to' I was so afraid I wouldn't remember everything being there by myself. She explained that the 'mapping' is really a 'test run' of the actual procedure. They go in through my main artery in my groin, and actually insert the catheter, insert some coil blockers where the blood supply goes to my lungs and my stomach because we don't want any of these beads going in those areas, then they shoot dye into me. Then they close it all up and I go to an observation area and they watch me for a couple hours to see where the dye goes - to make sure it gets to where my tumor is. They want to make sure when they have the real stuff it goes exactly where they want it to go - pretty cool eh? Then they order up the beads, especially made for me, and it gets sent to them. Once it's received, about 10 days later, I go in for the procedure. Here's the added 'feature' of this that I didn't know about. This protocol has a chemo arm to it - there is theresphere by itself, then there is theresphere with 3 different types of chemo that work along side of it. My onc has recommended a chemo regime for 6 days following my procedure. I will be hooked up with one drug (mostly folinic acid to work in connection with the upcoming chemo drug) which I will stay on, continually for 6 days. Then, starting day 1 after the procedure, I will have a chemo infusion for 20 minutes a day for 6 days. Wow. Didn't know this part. The drug I'm hooked up to continually is called leucovorin and I just wikipedia'd it and its a pretty interesting read if you're up for it. Then the chemo drug I will be administered for 6 days in a row will be a drug called floxuridine. I just googled this drug and according to the info on the American Cancer Society website, this drug is used to treat some cancers that have spread to the liver. Hmmm. I'm a little taken aback by this. My chemo vocabulary was, I thought, pretty extensive. When this drug name was thrown out to me I scurried to write it down because it sounded so foreign to me - now looking at it and researching it a bit, I am flabbergasted that I DIDN'T already know what this was. Whatever, just another reason validating why I am where I am right now. Wow.

So, I think I'm pretty much going to have to stay down in the Phx area for the entire time of my f.u chemo - it wouldn't make any sense for me to drive back and forth for 6 days - that would be crazy. OH - and I'm not radioactive - that was some misinformation I was given, so that's good I guess - no buster collar needed. Now - I meet w/ the radiologist for a consult on Tues and once he gives me the GO - we'll set up the appt for the mapping then the appt for the procedure. As much as I wanted to plan this over Madeline's fall break, I don't think it's going to work out that way. We're going to have to find someone to come up and watch my kids for me while I'm in Phx, and we'd like to arrange it where PJ would be there for my procedure and mapping, but I would do the 6 day chemo by myself so he could be here to be with the girls. We just need some help, and I know we'll figure it out somehow. I had no idea the chemo was involved, that just makes it a harder to schedule. Yes, I am so stressed about this, I can't help it. Ya know, it was a lot easier to take time off from my insurance job way back when then to try to take time off of being a mother to a 5 and a 2 year old. How does that make any sense???

I feel like my brain is on overload. I am a creature of habit and my whole 'cancer world' has changed - all of my doing, I realize that. This procedure is a bit scary to me, but something I know I must do. Again, it just makes sense to me. My hair continues to fall out, and I just don't have the best self image thing going for me right now. But I am slowly embracing this new path, and gearing up for this amazing procedure in this place called CTCA which I know I was lead to. On that note, I have to close with the following:

So, I'm sitting there in the waiting room waiting to be called for my chest CT scan yesterday, when the lady at the front desk says 'Dina, do you want one?' and holds up this box. I go up to the desk, and she has offered me a bible. It's a pink leather bound bible - in honor of Breast Cancer Awareness month. I looked at her and said 'wow - that is lovely, yes thank you'. CTCA was giving them away to anyone who wanted them. wha? So I open it up, and this was the page I opened up to - I have to share this, cuz this is amazing:

Holding on to Hope

Your grip on hope is slipping. You feel like the rope you've been hanging on to since your cancer began is slowly sliding through your fingers. Your hands are burning, cramping. You're down to the final few loose threads. You're squeezing the life out of that fraying, lifeless hope.

Let go.

Did you hear that?

Let go!

You won't fall into oblivion or hellish chaos.

You'll fall where you've actually been all along, even while tenaciously clutching your rope.

You'll fall into Jesus' arms. Into his love and protection. Into his care for you and your future.

You do have a future, you know. It may not look exactly like the future you were envisioning. It may include more suffering and pain. It may include more years....or fewer.

But it's exactly the future God had planned for you from the beginning. He knows your body better than you, better than any of your doctors.

You may be mystified by what's happening inside your body, bewildered by the decisions that need to be made, uncertain of what tomorrow will bring.

But never forget: You have hope.

Instead of a weak and raveling rope, hang on to your Creator, the source of your hope.

He's got you and your future in his very skilled hands.

God Bless -

And we're off........

2010-09-28T20:03:00.000-07:00

I was getting anxious this afternoon. CTCA didn't call me yesterday and I was getting anxious. This is the first time in this whole ordeal where I didn't have a plan in actual motion. I had called off my last treatment which was supposed to be last Friday expecting a call on Monday that never came. I just don't like not having a plan in action to fight this thing. I pushed a bit - I called my case manager on Mon afternoon and spoke w/ her then when I didn't hear anything by early afternoon today, I emailed her. Within minutes she called me and told me she was sorry they hadn't been in touch sooner but to expect a call from the surgeons nurse. This is a protocol procedure, so that means pre-testing to make sure all is in order and to also have a starting benchmark so to speak. Well, just as I got done saying out loud to myself in the kitchen this afternoon "everything is going to be fine, everything is going to work out just the way it is supposed to" the phone call came. I'm scheduled for a ct scan tomorrow morning then immediately afterwards a consult with the surgeon. Wow. Mind you, I pushed a bit, but I think that is just the kind of patient I am. I want things moving, I'm not one to just sit back and wait for things to move around me. Good, bad or indifferent - and well, it works.

My Madeline is still sick, which is really strange. I had to go pick her up from school yesterday as she complained of the top of her head hurting, had a low grade temp then threw up in the nurses office. I got her home, gave her some Motrin and lots of water and put her to bed and within a couple hours her fever was gone and she was begging me for food. This morning she got up and was running with her sister, no motrin no fever. 4pm hits and boom, she has a fever of 101. What the )(*)*U)? Motrin is controlling it, but since I haven't had a full 24 hours without a fever, I can't send her back to school. Poor thing. She's sleeping w/ me tonight so I can keep tabs on her - PJ gets to sleep w/ Ginger. So is the life of parents w/ small children. Gotta love it.

So went to the gym yesterday which felt great. I actually did 30 min on the elliptical, not bad for not going for over 2 weeks, and was working on some of the machines when I am not lying, this voice out of nowhere came into my mind saying this "quit spending so much time envying other people and make your life worth living!" No joke, out of nowhere these words came to me. I immediately started crying (although not missing a beat on my workout thank you very much) and realized just how frickin true this actually was. Envy had been feeling like it was taking over my thinking - and this was just the shot of perspective I needed. Awesome.

I have to say I am nervous about this new road I've chosen to go down. Sometimes I wish someone would just tell me what the right thing do to is. I still feel so bad for not continuing with my onc - I love her - I will miss her terribly - but this just makes sense to me in the way of treatment and an opportunity to completely eradicate it out of my body. She did so much for me - she saved my life. I don't completely understand her reasoning's for not supporting this procedure as a plan of action for me. Her exact words were 'we won't have a lesion marker for future treatment'. If I was just all about chemo drugs, this would make sense. But I figure if I have an opportunity to kill this thing why not do it? While my veins are still relatively healthy and able to sustain this. I'm already prepared to get another dose of chemo after this procedure to 'seal the deal' so I am totally on board for that - but it is just so scary. Have to prepare for a bald Christmas at the Mountcastle house I guess - but I have boobs this year? Next year I'll get boobs AND hair. What a gift that would be. I was reading again about the procedure today and wow, it's wicked cool - like total sy fy kind of stuff, but a little scary just the same. And I didn't know it was a protocol, but that makes sense.

Well, I best get off to bed here soon. I have an early morning ahead of me and an awfully long day tomorrow. Excited to get this show on the road. I was thinking the other day (uh oh) and wouldn't it be funny if after the procedure, since I can't be within 3 feet of anyone for a week, they fashioned me with one of those plastic deals they put on dogs necks, but this would be around my waist? Hmmmmmm.

God Bless -

Buying a box of toenails.

2010-09-26T20:50:00.000-07:00

Did you know you can do this? Did you know they actually sell fake stick on toenails? Shut the front door!!!!!!! So, I neglected to fill you in on the lovely side effect of the Xeloda I was on - the pill form of chemo that make my feet burn and peel and the palms of my hands peel? I actually have kind of lost my fingerprints, isn't that CRAZY!?! AND, I have always had sensitive big toes to begin with, well, the Xeloda just pushed it to an entirely different level, and it never really healed. (if that commercial where the cartoon fungus creature lifts up the cartoon toenail and starts scratching bothers you like it did me, then the content of this part of the post might too - you've been forewarned) My big toenails had lifted off the nail bed and they never reattached - so I had to go to a podiatrist to have them cut down. I mean, luckily they hadn't fallen off or anything and they are still attached at the base of the nail, but YUK! and OW! I have to say, I have never been to a podiatrist before in my life (this cancer continues to give me new experiences) and I had to bring Madeline w/ me because my appt was right after she got out of school on Thurs. This turned out to be a really great thing because when he went to cut and file and sandblast my toenail, the words that wanted to fly out of my mouth remained safely intact as I looked down at my 5 year old staring at me asking "does that hurt mom???" I didn't lie - I told her that yes, this didn't feel really great, but he was going to make moms toes all better, but wow, not what I wanted to say, not even close. So now I get to walk around with these two big bandaids on my toes - and yes, the podiatrist suggested I go and buy some fake toenails to stick on there so they look pretty while they are growing back out. Ginger and I poked our heads into Walgreens, my favorite store, and by God, there in the fake nail section, there they were at the bottom of the display wall, a box of fake toe nails. Hmmm. Who knew.

So this weekend was filled with normalcy, thank you Jesus. Love the normal family crap - just love it. I have to say that I have continued to battle with envy - it just lingers in my mind and seems to follow me everywhere. Envious of people I see on TV, of people I see driving around, of people I pass on the street, envious of the parents at Madeline's school - I'm just so envious of people who don't have to go through this - I know I saw it as sort of a blessing before, and I still do in a way, but my envy is taking over that way of thinking and I'm really frustrated with feeling this way. I know that my life is my life, and I wouldn't trade it for anything. I have such blessings in my life, I am humbled by the thought of them. But I still get so sick, sick with envy when I think of what I have to go through, what fears I have to battle on a daily basis, what my family and everyone I love is going through, what my children know as normal, what my husband is going through - I just get so envious of those who don't have to do this. Young or Old - my envy has no boundaries as of late. I guess recognizing this is the beginning, and envy is on that list of the seven deadly sins - which is an interesting observation I made this morning while getting ready for church, which also helps me put a spin on this behavior of mine as well. I just don't want to feel like this - I want to be happy, I want to enjoy what I can every minute of every second of the day - and I want to continue to fight this thing with a spark in my eye and determination and peace in my heart. I am tired of being tired, and want to wake up and get moving, but some days my body just won't do it. Some days my mind just won't do it. Some days I just don't want to do it. So frustrating. Like I have a picture in my minds eye of how I want to be, and it is such a struggle lately to get there. Again, frustration level is huge on my part here. I have to be careful too because when I get like this, I tend to withdraw and just keep to myself, which allows my mind to wander quite a bit - and then conveniently use cancer as an excuse to withdraw. It's good one, not many people challenge me on this either I find, so it's an easy out. Dangerous. I'm working through this, slowly, but working.

I will get the news from CTCA tomorrow once they speak with the surgical oncologist to say for sure if I'm on board for this therashere procedure, so prayers and good vibes please!! I'm actually going to try to have a normal day tomorrow and get my fat ass to the gym. I won't be able to do any upper body stuff as my squishies are still healing (not fast enough for me) but I'll do some cardio and some leg and ass work. My chest is healing fine, the left side is way tighter as that scar tissue isn't breaking up as much as I would like - but it is still early and we'll see. It's still way better than the expanders, so I keep reminding myself of that. I'm back in bed and trying to sleep without the aid of medication, but that is still difficult. Last night I was all awake and antsy and mind wandering and I couldn't get comfortable to save my life - so I got up, took a couple pills and fell asleep. I've been real honest with my new medical team about this, and will switch to some melatonin to see if that will help once I'm past this initial healing stage. No one seems to be too concerned with this - so I won't be either.

Off with me now - going to relax on the couch with my hubby and watch some ridiculous reality show we've recorded. Sometimes that is the most relaxation ever - isn't that funny. My friend and I have started a 'Mom's Surviving Cancer' group which meets for the first time tomorrow night. We're going to get the word out and meet the last Monday of every month at my church - so we can all kabitz and vent and laugh and cry and pray or whatever - just be together, and let each other know they aren't alone. Gotta be some good in that - eh?

Have a great week - God Bless -

The Tentative Plan

2010-09-24T11:35:00.000-07:00

Well, my apologies for not posting sooner. I really need to cuz if anything, I tend to forget things a LOT lately, so at least for my own personal reference, I need to record what has gone on so I have something to look back on. Oy.

My last day at CTCA was much better. Meds made for a smoother part 2 of my MRI and the results were actually pretty good. My bones are actually getting stronger and healing from the cancer mets - which is great news. My lower back pain is finally diagnosed as degenerative - he says my lower back looks like that of a 60 year old - nice. So I'm going to be meeting with another physician there to help me manage that pain, he wasn't there while I was there, but I will most likely meet with him next week. Which brings me to my treatment plan. My oncologist feels I'm a candidate for a procedure called theresphere - where they go in through the vein in my leg, administer these tiny glass like beads filled with radiation to the blood supply feeding the tumor on my liver - the beads then block the flow of blood to the tumor, then release the radiation directly onto the tumor, thus, hopefully, killing it. Once administered the release of radiation takes about 5 days - so I would need to stay overnight in the hospital the day of the procedure just to make sure I heal from insertion site, then stay away from people for the next 5-6 days cuz I'll literally be radioactive. Pretty cool,l right? This is actually what I was hoping to be a candidate for, so I was pretty excited. He would then schedule me for about 3 months of chemotherapy afterwards, which drug we're not quite sure yet. He had even called my current oncologist and discussed this with her too, and he shared with me that she had agreed, which made me feel even better. That story later changed I think, but I'll get into that later.

So they need to check with the surgical oncologist who does this, who was not there but will be back on Monday, then they will get in touch with me to schedule everything that goes along with getting this done. They actually do a 'mapping' of sorts to my veins, so they know ahead of time which veins they need to access (makes sense). So this will be an orchestration of sorts for me - trying to manage my family while I get this done. Yes, this is exactly what I was thinking while they were explaining it - who is going to watch my kids??? I really want my husband with me but will he get fired for going with me to this??? Life just takes hold of our excitement sometimes and pulls us back down to reality. But seriously, this whole procedure just makes sense to me. If we can treat the liver directly, why isn't that just the best option around? Especially while my veins are still in decent shape - chemo just ruins them, so before I go on the chemo merry go round, why not try this first? It just makes sense to me. So the drive home was strange, PJ and I were both deep in thought pondering this, then letting various thoughts fly out of our mouths, but it was as if we were having an internal and external conversation the whole time. We are excited, just still feeling like a 'fish out of water' at the CTCA, the treatment plan, the future. I think we got comfortable in our little 'cancer world' and this just shook everything up a bit. Not necessarily a bad thing, just different. Plus, when we were staying there, it was great, don't get me wrong, but it was like we would start to kinda enjoy ourselves, then remember why we were there and kinda subconsciously stop - it was really weird. PJ and I got a lot of sleep, which was great - and had some real conversations - ones with beginnings, middles and ends - which was also great. My girls were fabulously taken care of for three days by my dear mother and niece, I am eternally grateful for their help. To be able to keep my kids at home, in their own surroundings and not interrupt Madeline's school schedule brought a sense of peace to my heart - it allowed me to not stress about them, which was priceless.

I am having a hard time with getting care from someplace other than my current onc. I am so tied to her and that facility - I mean, look at the history? I feel like I'm cheating on her or something. She isn't too happy either. She called me at home a couple times asking me all sorts of questions and giving me information on a patient of hers that had this procedure done and while cancer wise it worked, one of these glass beads got into their stomach lining and they were throwing up every day. Some other opinions were shared too, and I left this conversation feeling empty, sad, lost, and confused. I know that I am coming from a place that just wants this thing gone - out - done and over with. While I understood the logic in 'we'll try this drug till it doesn't work, then the next drug till it doesn't work, then the next drug - ' I don't want to be pumping my body full of drugs for the rest of my life. If we've exhausted every other possibility and that is what I'm left with, then fine - but I just thought maybe, maybe there was another option and that maybe, a team of dr's coming together to come up with it would be the best way to find out. One thing I've learned through this whole stupid process is that if you aren't actively managing your own care, you can really screw things up as you tend to your other medical needs. I have to inform each and every other dr I see, from my plastic to my podiatrist, of what is going on with me. I tend to forget what I said to the person I last spoke with, needless to say, having to regurgitate my frickin cancer story to each and every medical professional I come in contact with probably gets skewed a bit in the retelling. Do I think CTCA will cure my cancer - I don't know. But I'm willing to let them try, and I hate that I'm feeling punished for doing that. I realize that I am responsible for feeling this way - no one can MAKE me feel anything, they can certainly influence, but they can't MAKE me feel anything - that is my choice. I know another conversation is in order for she and I - I just need to get my emotions in check, and come at it from the cleanest place in my heart. That's all I can ask of myself. I need to do what is right for me and my family as I continue to fight this stupid thing, they are the reason I continue to move in a direction of healing. I'm not giving up on hope, and I have to say, CTCA makes me feel hopeful as well - which doesn't suck either.

So on a completely different note, while we were there, PJ and I were commenting on how the clientele at CTCA was so different than what we were accustomed to - they don't take Medicare, so there weren't hardly any older people. Then we get into the elevator with this Asian couple and as we say hello, we see they clearly don't speak English real well. So, the proverbial smile and nod commence. Then, this gentleman gets on by himself, another proverbial smile and nod. So there we all stand in the elevator, this man, then PJ and I, then the Asian couple. The man's cell phone goes off and his ring tone, no lie, is the Asian tune that comes right at the beginning of the song 'I'm Turning Japanese' - do you know what little tune I'm talking about? DET DET DET DET DET - DET - DET - DET - DET. There PJ and I stand, I raise my eyebrows as if to say "wow - how ironic is THAT" and slowly look at the Asian couple to see if they react to this situation. The proverbial smile and nod. PJ and and I could hardly contain our laughter. He kept telling me to be quiet until we got outside. Frickin hilarious. The man couldn't answer his phone fast enough - who would have ever thought, in Goodyear Arizona, you'd be in an elevator with an Asian couple when you picked that ring tone. Hmmpf.

Well, off we go into our weekend, Madeline has a soccer game tomorrow and she loves it when her Dad takes her to these. Definitely a Dad/Madeline thing, which his so awesome. Ginger and I get to stay home and nest - we like to do that. Ginger has taken to grabbing my face and pulling me into hug and kiss her lately, it is the sweetest thing ever. Good vibes and prayers for Monday morning, I'll get the call that we are good to go and start figuring out how to make this work. Fall break is coming up and I think I'll try to schedule this over that so at least it wouldn't involve carting my kids around.

Thank you all for your prayers, your good wishes, all that good stuff. I appreciate it all, so much, especially as I enter into this new phase of treatment to abolish this tumor hopefully and prayerfully once and for all. Have a great weekend.

Dina

Day Two on Planet CTCA

2010-09-21T07:20:00.000-07:00

So day one was a whirlwind. I met w/ 6 different doctors all before noon. I have to tell you it was refreshing and amazing to know that all these medical professionals had already READ my file, knowing pretty much everything about me before they came into meet me. The thought that they took the time to do this was amazing. The thought that all these professionals were all dedicated to meeting on ME and MY CASE is quite a humbling feeling. My feeling that everyone going through cancer should have this available to them was strong, and overwhelming.

On the agenda today, I have a PET scan scheduled for this morning after I meet with my primary care physician to discuss my blood test results, then I have the first part of and MRI. I finish my MRI tomorrow morning, then meet with my entire team in the early afternoon to be presented with my treatment plan.

Yesterday, I spoke with nurses, my primary care physician, a naturopathic, a clinical oncologist nutritionist, a mind and body therapist and patient advocate. Pretty frickin amazing. The thought that they all do this together, as a team, is really quite a simple concept, isn't it? I mean, duh - this just makes the most sense. To take all these smart people in one place, then have their focus be on one patient at a time, I mean, wow. My discussions with them all yesterday were fine. The therapist reminded me I needed to laugh, especially with my husband more. I mean, I usually don't have a problem accessing my sense of humor - but I've been so stuck in my head lately, this was a nice reminder for me. Plus this whole experience has kinda been starting over, reliving this whole thing, which I have to admit has been difficult. But again, trying to hone into my sense of humor and trust in God. Sometimes we gotta just get ourselves out of our heads, right?

Hate to cut it short, but I've got to run to my dr appt and PET scan. I'll check in this evening.

God Bless -

The Motherload of Cancer Centers

2010-09-19T22:28:00.000-07:00

Well, what a whirlwind. First of all, sorry for such venting in my last post and shame on me for not just lightening up a bit. Sometimes all we need is a little space for some perspective. Am I still a little scared of what lies ahead, my Lord yes. Is there anything I can do about it? Well yes actually, I can pray and use the brains God gave me to figure out what our next step is supposed to be and that is exactly what we are doing. Mostly, we are trusting. Huge and hard but totally doable.

OK - so, had a wicked busy week which included but wasn't limited to Lunch w/ a Loved one at Madeline's school, trip to Phx for Dr Mo to check out my rack, MOPS meeting, Spaghetti dinner at Madeline's school, Madeline's soccer game - by yesterday afternoon I was thanking God my mom was up for the weekend so I could take a nap on the couch. I was exhausted - knowing I still had to gear up and get everything ready to be down here in Goodyear for the next three days. We check into Cancer Treatment Centers of America this evening and WOW - but I'll get to that in a moment, not to worry.

My appt with Dr. Mo went well, but wouldn't it just figure the left side had more scar tissue to deal with than the right side, so we need to try to stretch it out a bit. Here I am thinking at the beginning of this that at least they will both match at the end of this, when, alas, not happening. And the ironic thing is, the cancer was in the right side - the side that looks pretty good now. Oy.

Madeline's soccer game was the bomb - she is so frickin cute, I just can't stand it. And my mom and Britt watched Ginger while the three of us went to the Lincoln School Spaghetti Dinner Friday night, and we had the BEST time. I am so blessed, so very very blessed, to be the wife to my husband and the mommy to my girls. I know I say it like, a million times, but it is so the truth. This life I've been handed is so awesome.

That's kinda where my brain is starting to land now - in getting back to the moment and loving the moment. I feel like I've been stuck in my head for the past month or so - just, stuck. I haven't wanted to really talk to anyone except certain people, I don't want to explain things, I have no patience for stupid people (not that I had a lot before), and just basically wallowing in everything about me. Aren't we supposed to wake up in the mornings and ask ourselves 'what can I do today to make a difference to someone else?' I feel like such a shit - I've been wallowing in ME lately, and I need to just get over it. I know I am facing a serious situation, but even so, I have way more than a lot of people do, so I need to spend more time praising and giving back to others. Taking the focus off ME helps put ME in perspective when I get back to it, if that makes any sense at all.

PJ and I had a date night this week, where we were able to sit and chat over dinner w/ no interruptions which was actually quite lovely. We never received a response from his employer as to whether or not they were OK w/ him coming with me to CTCA, so for all we know he may very well lost his job for coming with me. But, we are as prepared as we ever are going to be for anything. I am so proud of my husband. He is probably just one of the best people I have ever known. He is a good man, a good friend, a good human being. He gives me perspective on things in a way I would never think of. We are a team, and whatever happens we will handle and face together.

My mother has done me the HUGEST favor. She is watching my kids for me, at my house, so PJ and I can be here, at CTCA. My mother is going through chemo herself too ya know - so this is the remarkable example of being a human I have had throughout my life. Talk about blessed.

So we arrive this evening and as we walk into the building, let me just write what is written on the wall, just as you enter through the main entrance:

You are passing under the Beam of Hope. This beam was signed by people who have been touched by cancer, just like you. They are patients, survivors and family members who made the journey you are now making and signed this beam as proof that hope is real. We will accompany you on this journey and will share your passion, acknowledge your courage and celebrate your tenacity of spirit. Cancer Treatment Centers of America is your home for healing and hope.

Wow. Are you frickin kidding me? This place is amazing. We feel like we have entered into another dimension - everyone here is so nice - and not 'fake nice' like, genuinely nice - from the heart, and I haven't even met my medical team yet. Cory, the security guard, gave us a tour of the place once we got settled in our room, where he explained they operate on 'mother' mentality. Everyone who comes here is treated as if they are your mother. (they are obviously assuming healthy mother relationships here) Anyhoo, I know I am here for a purpose, whatever that is. I was gathering all my paperwork together today before we left and I sort of 're-lived' it all as I went through the papers, reading old test results and remembering when this whole journey began. Now that I'm here, I know this is exactly where I'm supposed to be. My morning starts early tomorrow. I report to clinic at 7am where I will meet my whole team, so I best wrap this up here and head off to bed here. Plus, PJ needs to get some work done here so he needs the laptop.

My dear friend Pastor Mary leaves for Wisconsin tomorrow. We decided to go and listen to her preach for the last time this morning, what a privilege. Her sermon what about worry, and the little good this does us in our lives. She has made such a huge impact in my life, I will miss her so much. She spoke to me in so many ways on so many levels, it's hard for me imagine my life without her directly in it like she has been for the past couple of years. I am proud to call her my friend, and I will miss her. She was one of the people who told me to call CTCA again, because it had been on her heart. I am so excited for her new journey, and know that her new church home is so lucky to have her. Tonight my prayers are for her.

I will check in tomorrow to let you know what we have experienced here, I'm nervous and excited.

God Bless -

Did I mention I'm losing my hair again????????

2010-09-14T07:07:00.001-07:00

Yea, isn't that just a precious nugget of loveliness? This started on Sat night, I noticed I ran my hand through my hair and pulled out a nice palm full of hair. I'm not sure what 'thinning' is, but this is 'losing' hair to me. I broke down Sat night, seems like I'm trying to improve in one area while another areas are just going to shit. I think this chemo has also effected my toenails, which have been a problem since the Xeloda - my big toenails seem to be lifting off the nail beds. Just my big toes - go figure. So there I sit on Sat night, trying to poop cuz that is still going on, applying peroxide to my toe watching my hair fall to the ground. My sweet, dear husband, catches me on the pot crying and tells me that everything is going to be alright, in the way only he can say to make it actually feel OK. He is amazing. Then Sunday, my husband rec'd an email from his boss basically saying that if he didn't dedicate more time to work and less time to 'taking family members to doctors' he would be fired effective Oct 1st. The ironic thing is, is PJ working so much has been at the crux of our arguments - if they were to see him, they would see that he is constantly, 24/7, working. It was like we both took a hit to the gut. We couldn't believe it. PJ is the type of person who is passionate about what he does, he is that employee that you love because he always goes the extra step, without being asked. It's what attracted me to him in the first place, we both share the same type of work ethic. This means we are also personally invested in our careers, which does have its downfall, but I feel the benefits of this type of work ethic clearly outweigh the negative. Therefore, this was frustrating and hurtful on many levels, to both of us. And, to be quite honest, frickin scary as hell. We live paycheck to paycheck, we don't have anymore savings to fall back on - all of that was spent when I was initially diagnosed last year. They were apparently upset at the time requested off for Cancer Treatment Centers of America, 3 days next week. I couldn't imagine attending this appointment without him. I know the Lord doesn't give you anymore than you can handle, but this is pushing it to its limit. If anyone is frustrated with how long this frickin disease has been going on w/ me - trust me - it's me and PJ. And because I am who I am, I can't help but feel responsible for this happening. The guilt of needing my husband by my side, does that make any sense at all? Much less his guilt of wanting to be there for me, and being the sole supporter of our family - I can't imagine how that feels. Needless to say, this past weekend has been a whirlwind. I ask for your prayers on this for us - please let PJ keep his job and somehow be able to be there for me next week. We responded to this email with compliance with everything except this upcoming appt - and we haven't heard anything from them. PJ and I can be 'worst case scenario' people sometimes, and part of us thinks since tomorrow is the 15th they'll just fire him tomorrow and be done with it. I couldn't imagine them treating him this way after all this time and dedication to this company, but something else I've learned in this life, and especially with this disease, nothing people do surprise me anymore. All we can do is speak from the heart, give 110% to everything we commit to, and trust in the Lord. Wow, that isn't always the easiest thing to do, funny how it works that way. Am I right to vent about this here? I have no idea, I just know it's all over me right now and I'm paranoid and worried and quite frankly, scared to death, so I had to get it out somewhere. I would appreciate your prayers and good vibes coming our way on this issue. We both need it.

Now, the unveiling of my girls was kind of uneventful. I mean, I breathed a huge sigh of relief to not be bound up like that, but they are, let's see, smaller, much smaller than my expanders were. I don't know what I was expecting - now that I think about it, I think I was so used to how the expanders looked, I was expecting a smaller version of that - but they are nothing like them at all. Not bad - VERY SQUISHY - yay! and much much more comfortable. I feel like that 90's song "I Touch Myself" because I can't stop feeling them - they are amazingly squishy and so much better than the others. Veronica says they are going to 'drop' which I thought was a very 'gonad' comment - but ok. It takes like 3 weeks, but they indeed, 'drop'. Interesting, eh? I'm not supposed to be wearing a bra or anything right now, so I feel a little 'exposed' so to speak. I've finally posted some pics below of what I look like now, so far so good, I'm actually really pleased and so much more comfortable. Still can't sleep in my bed yet, I"ll be another couple days in the recliner, but no worries.

I think right now I'm just fighting depression. I'm excited about my boobs, but just long enough for that to be swept away by my hair falling out, my toenails falling off, PJ possibly losing his job, and not knowing what Cancer Treatment Centers of America will have to say to us. I don't want to put all my proverbial eggs in their basket, but I feel myself slowly doing this. I hate being on this chemo, I hate that my ass is bleeding every time I poop, I hate that my hair is falling out AGAIN as I was just starting to kind of like it, I hate that my husband feels like he can't do anything right when in fact he does a whole lot right all the time, I hate that we may lose our sole source of income, I hate that the word 'cancer' is in my children's vocabulary - blah blah blah - just filled with a lot of hate & frustration today. I know, this is not healthy for me - trust me, I know. I need to give this all to Him I suppose, just pray it away cuz walking around with this is painful. Really painful.

Here's some pics - I'm posting before and after so you can see the difference between the expanders and the implants. I wish I could end on some positive note, some light comment or quick quib, but this is how I am feeling today and I just need to process through it. This just happens to be one of those times of 'when it rains it pours' I guess. Thanks as always for reading.

God Bless -

Dina - The Human Burrito

2010-09-11T15:48:00.000-07:00

So - surgery went great. Here I am, wrapped like a burrito in this ace bandage which I can actually remove tomorrow which I am pretty excited about because I can't see or feel what the new girls are like. And, per my conversation w/ a fellow reconstruction patient, I look down and wonder who the poor soul was who got to lift up my fat ass and wrap me in this thing. I made sure to apologize to all medical staff I came in contact with for this upcoming task. I think they said that Dr. Mosharraffa was actually the one who wrapped me. Hmmmm. Still - I feel good today, was totally drugged out yesterday which was fine - and my evening wasn't quite as peaceful as one would have hoped. We lost Ginger's binky, so last night was our first night without it, and needless to say, it was a challenge. Took a long nap today, and feel pretty good now. My right side makes a funny kind of squishy sound when I move my right arm a certain way, not sure if that is just fluid or my implant or what. We'll see. I can't believe I get to take off the bandages tomorrow, I'm excited and nervous.

When I was getting ready to go into surgery and talking with all the medical staff, this time has always been a fun kind of chitty chatty time in the past. I always love getting to know the staff that it taking care of me, cracking jokes and laughing. This time however, I found myself retelling my whole story to not one, not two, but 3 different medical staff personnel. I watched their faces as I told them my situation, and then found myself reliving it - which made me very sad, and scared. My husband watched me retell this story, and I saw in his eyes the same thing. Then, after the last time I told it, and PJ and I were left alone in the pre-op area, he looked at me and said "When you tell this story, you need to tell it with a sense of courage, and honor, and proud of your 'war wounds' - we both need to start telling it this way - cuz this was just sucks" and we both started to cry. But he's right, I need to own it, make it mine, and be proud of my fight. Right now, I think I am, but when I tell people there's almost of sense of apologizing in my voice - it's weird. Not sure where that is coming from. As always, only we know the actual story, the real lives we are leading, the real me. Only we know how this feels. Sucked to go into surgery crying, but I am honored to have my husband by my side - giving me just the right words of encouragement exactly when they are needed. Did this kind of rob me of the excitement of the surgery? Yes. But, I felt much better mentally when I came out of the anesthetic (thank you drugs) and I feel much better now. It's still sitting there in the back of my brain, but I am slowly digesting the new way I need to tell this story. As we can control how we relay information only, not how it's perceived.

Off to rest now, I think this binding is sometimes more uncomfortable than the actual surgery. Thank you for all your prayers, I can't tell you how comforting it feels to know others are praying for you. I don't think I can ever explain the feeling that gives me - and I am ever blessed to be surrounded my such wonderful, powerfully spiritual people. I am certainly here, in this place, in this world, for a purpose.

God Bless

If you want to be a Superhero, do you go to Superhero College?

2010-09-10T07:53:00.001-07:00

Madeline asked me that during our discussion on the way home the other day. I was explaining what college was and told her that sometimes (I re-emphasize SOMETIMES) it is easier to pick a college when you know what you want to be when you grow up - like a doctor goes to medical school, or a lawyer goes to law school. Then she asked me the superhero question. I told her we would have to ask her dad but that I thought I would totally make sense to have a superhero school. I love my kids.

So here I sit here this fair Friday morning, not able to eat or drink anything as I have surgery here in a couple hours. My brother in law, bless his dear soul, came up to handle my kids for me while I am gone today - and I love and trust his dearly, it's just so hard to let my children out of my sight. I had a hard time saying goodbye as he climbed into the van with them this morning.

I feel pretty good about this surgery - I'm obviously excited and want this done and over with already - but want to relish in it a bit as well. OH - my scan results - well, they were stable. No change. Which, considering I had only had 2 treatment and my cancer has been growing at a steady rate of 1cm every 2 months, is good news to me. My onc said she felt it was too early to tell anything, but I think this tells a lot. I'm holding onto it anyway.

My prayer warriors were in full force throttle yesterday, led by my inspiration, Pastor Mary. Pastor Mary is moving away this month - and I will miss her dearly. I can't imagine what my prayer time, or what my time in general, will be quite like without her near. I am selfishly sad for me - but so excited for her new endeavor. Gotta move with the cheese dammit. Not so much fun sometimes.

So my surgery is at 11:30 this morning, takes less than an hour, so I'm hoping to be back up here by 5ish at the latest. We'll see. I've got my appt set with Cancer Treatment Centers of America - it is a 3 day intake process - and I go on the 20th. I'm hopeful. My friend Lani put this best yesterday, because the term 'second opinion' wasn't sitting well with me - it sounds so sneaky and doubtful of my current treatment, and that is not how I feel. She said that it is simply more. More information, and more information is always good. I like this, thanks Lani.

My husband has started the car, so I best be off - wish me luck with the insertion of my squishies - never thought I'd wish for some sagginess, but alas, I miss some sag.

God Bless -

Squishies Here I Come!!!!!

2010-09-06T20:40:00.000-07:00

I am so excited to have this surgery I could just eat beetles. I'm serious - first of all, the drugs are great, and most importantly, can't wait to no longer cause a head injury to my children when I hug them. These are deadly I tell you - if I turn into you too quickly I can cause some serious damage.

Treatment went fine on Friday - had the Zometa and the Adrymiacin. We even made it back in time to pick up Madeline. Lots of driving though. Nice to share this with PJ once again, I've missed him terribly on so many levels lately. I don't want to go into this too much here, but PJ is very much in anger mode, and the rare times we have of laughter and good conversation I hold onto tightly these days. I don't know how to help him process this - I'm thinking his upcoming hunting trips and a chance to just get the hell outta dodge and all that this represents will do him some good - I'm so praying it does. I've run out of things to say, words of comfort, snippets of wisdom, I got nothin more up my sleeve folks. I just pray for him that he can get to a peaceful place so we can enjoy each other again - not that we don't know, but we don't as much as we have in the past, even since this began. I don't know how to fix it. I totally understand the anger thing to be honest, I can feel in the pit of my stomach my own need to go there sometimes. But I know that going to that place, for me, would be the most destructive thing I could do - for me, my health, my family. And it serves no greater purpose for me - my anger, believe it or not, turns quite quickly to hope. To peace. I get sad, I get scared, but I don't really get angry - not anymore. The more time I spend angry, sad, scared, pissed, pitiful - the more I'm missing the now - and that, unfortunately I think, is the thing that only having cancer can teach you. It kills me to watch my husband and others go through this - but there's not a damn thing I can do about it. Sucks. Just praying, doin that a lot.

We had Madeline's little pizza party at Peter Piper and it was really fun. Just big enough, had like 7 little friends running around with her and she did just great. She got a big girls bike for her birthday this year, and we took her riding on Sunday after church. Again, she is such a big girl. I can't believe my little 5 year old is riding a big girl bike. OH - then tonight PJ and I were busy in the kitchen getting dinner ready when we heard someone in the bathroom, making the 'going to the bathroom' sounds and we walked in to find Ginger going potty all by herself on the big potty. She just went in and went, all alone, all by herself. I can't believe this is happening so fast. I look at my kids, so full of wonder and life and humor and sass - and I am so proud. We made these kids! PJ and I made them! I sometimes just sit in awe of this - I am so very blessed to have the rockinest family ever - how did I get so lucky?

So I have surgery scheduled for Friday, and I have a pre-op appt tomorrow in Phx. My onc doesn't want me to have treatment for a couple weeks following this surgery to heal, therefore, she has ordered a CT scan for Wed - so we can see what this current medication is doing to me so we know what we're up against taking some time off. I think part of me was really looking forward to not knowing anything for awhile. Call me Queen of Denial, eh? But I totally understand the need to test - and I am blessed my onc keeps such close tabs on me. So on Wed I'll get my blood drawn to make sure my white blood cell count is on point for my surgery then have this CT scan. Am I nervous? Yea, I guess. I don't really know what to feel anymore, I've been on this recurrence roller coaster for 6 months now - not really sure how to feel. I wish I felt more hopeful, maybe I just am not as full of hope right NOW as I usually am, I am pretty tired tonight. That could be it. I know my faith has grown considerably the past month - I didn't think it could get any deeper, but it has. My relationship w/ JC just continues to grow and evolve, it is so amazing. It's like my brain keeps getting these different rays of light shone into it showing me all this new and interesting information. Pretty frickin cool. I have decided, and this is my own decision just because I want to - not because of anything that has happened, I have decided to get a second opinion. Don't get me wrong, I have the utmost confidence in the care I am getting right now - but as I continue to learn and wrap my brain around my diagnosis, it has lead me to want another set of eyes to look upon my case. When I was first diagnosed, I had called Cancer Treatment Centers of America, and they did not take my insurance. Well, something recently (and someone) put a little bug in my ear that I should check this out again, have them run my insurance again. When I was home sick on Monday, I was cleaning the kitchen and one of their commercials came on and I just thought what the hell - so I picked up the phone and called and they still had all the information from April last year - and they ran it through again, and now my insurance was approved. So, I'm going to pay them a visit and see what they have to say. I am so nervous about hurting my current onc feelings, I don't want this to send any sort of wrong message, I guess the corporate bitch in me is coming out now, knowing that it helps to have another set of eyes on a situation, different perspective can sometimes shed new light - sometimes not - you just never know. It feels like the right thing to do - I mean, this is my life we're talking about - we shop around for homes, cars, shit even clothes - why is this any different. (do I sound like I'm trying to justify this? probably, I just feel guilty, that's who I am, can't help it - damn it)

I wanted to share the 'call to worship' portion of this weekends service as it reminded me where to focus my attention when things start going awry. I love this:

We come together O God, asking that you create in each of us a kneeling place, where we may empty ourselves of self importance and become vulnerable to your word to us.

Help us set our faces firmly against friendly suggestions for safe and expedient lives, and toward the risk of discipleship. Loosen our grip on certainties that smother possibilities. (isn't that FABULOUS!) Forgive our resistance to change.

Let us pursue the adventure of losing our lives in order to find them in You. Guide us to follow the way of the cross where despair is transformed by the promise of new life and where we are compelled to intercede for those who have more pain in their lives than hope.

When we are too eager to be 'better than'...
When we are too rushed to care...
When we are too preoccupied to listen....
When we are too quick to act from motives other than compassion
transform us so we can live our lives in the light of your costly grace.

Isn't that just the bomb?

God Bless -

5 years ago today.......

2010-09-02T20:15:00.001-07:00

I had Madeline. Well, it was yesterday actually. My baby turned 5 yesterday. I can't believe it. I also cannot believe our lives the past 5 years either - how much could we shove in here? In brief - we had our first baby, I changed jobs, I quit my job after 20 years in the insurance industry, we moved to AZ, PJ started a new job, then he took back his old job, we bought a house, we bought a car, we had another baby, I get stupid cancer. Wow. Time flies.

So, my last post was a little - well, passionate, let's use that word. I have treatment again tomorrow, and I'm going into this with somewhat of a different outlook. This past week has been good. I've done further processing. I was just thinking in the shower (which is where I do most of my thinking actually) and I know the 'cancer is back' conversation sucks and still kinda scares me, but what is equally as scary and frustrating is that the 'routine' we have created around this thing continually changing. It's so frickin frustrating. I want my life to be as normal as it can be around this thing - and as much as I don't want to 'identify' myself with this disease, the constant changing of regimen makes it difficult not to, if that makes sense. I don't know if it is better or worse to not look sick this time round - it can do some crazy shit to your brain this cancer thing. Sometimes I feel sick and although I don't look like I WANT to look, no one would know by looking at me what I was doing once a week, ya know? Me, hanging out at the chemo club tappin into a dose - who would know? Sometimes I want the world to know, as stupid as that sounds, sometimes I wish no one knew. Sometimes I just treat it like something scheduled in my day planner as something I have to do - sometimes the reality of what is happening to me settles into my soul and it takes my breath away.

My feet are continuing to peel. You should've seen the look on my nail lady's face when she recently gave me a pedicure - she looks at me with such pity and slight horror. I feel like saying "please, this is nothing - you should see my asshole!" Which reminds me - update - the constipation thing is working itself out (funny eh?). Still painful but going, and it's getting easier - I think my body is just acclimating itself to the drug, my new supplements, and no more percocet. (yay?)

I get my new implants next week - my surgery is scheduled for Friday and I can't even begin to tell you how excited I am to get these expanders out. I hope they will actually do the surgery as that is one bill I haven't gotten to yet - still owe them like $1200 - but, hopefully I can get them a little before next week. So hard to choose which of the pile of invoices is to come first - but, that is a separate blog for another time perhaps. It's amazing to see what we need to try to fit into our budget now - who knew co pays would have to be part of our monthly budget. Sucks. Anyway, I'm ecstatic about this surgery. Not that I have any idea what the new ones will feel like, I have no point of reference whatsoever, but they have GOT to be better than this. I will post some pics this weekend - so we have before and after shots - I would now, but I just showered and am all comfy in my Costco pajamas. I love Costco.

I lead my first MOPS meeting today and felt so at peace with it. I am so excited to be part of a group that puts moms first, and loves on them and their children. A place they can come to give them a break. I said the G word (God) and I don't think I scared too many away. I'm not a preachy kind of person, about this anyway, but do need to share with them what is on my heart. It would be dishonest of me not to. In any case, it went really well today I thought - I have the best leadership team on the planet - and I feel like we are up and running now. Amazing stuff going on there. Amazing. This is the only thing I have kept on my plate - this is outreach that I am meant to take part in.

PJ is going with me tomorrow, and I'm so ready. PJ and I need these times together, as crazy as it makes me for us both to be in Sedona when Madeline is in school, he and I need this. We are starting the Fat Smash again next week, since it incorporates everything everyone has been telling me to eat. It is what we need to do for us mentally, physically, emotionally. We both have committed to get back in shape, cancer or no cancer. It's just too important to our lives. Literally.

I tucked my girls in to bed tonight and had the most amazing moment with Ginger. She's 2 1/2 and she's in that phase where she doesn't really cuddle or love on me as much as I want her to - so when she does decide it's what she wants to do, I try to soak up that moment for everything it's worth. I'm kissing her good night, telling her that I want a 'No Binky Kiss' and she holds my face in her little hands and just stares into my eyes, little crooked smile behind her binky. Our faces were mere inches apart, and she just stayed there, locked into my eyes. It was amazing. Then she pulled my head into her and wrapped her little arms around my neck, hugging me. I forget to get in her space like this sometimes, to get down to where she is to really connect with her. We all just need to get down on the floor, down to their level more often and just connect.

God Bless

Cajun Chemo #3 - Pick It Up!

2010-08-26T20:34:00.000-07:00

Well, treatment number three went down nice and smooth. Red as blood going in - so strange. I must say, these treatment experiences continue to astound and surprise me. I was so wanting to post last night but really just needed a long conversation on the phone w/ a friend to kind of, well, decompress if you will. Thank you friend.

PJ ended up going with me to treatment yesterday, which was good I guess. He basically worked the whole time, but at least he much was able to pay attention to how the whole NEW process works now. He was there in time to pray with me before the adrymiacin - and that is really the most important part. I don't know if I've explained it here before but the nurse sits right in front of you administering this chemo drug. It's a little invading - like I was used to them just hanging the bag of medicine, flipping the switch and off they would go - leaving me to my own meditation of sorts while the drug flowed through me. This way, the nurse is literally touching knees w/ me. Plus I have to eat ice chips throughout it to keep from developing mouth sores - another distraction. This time I just closed my eyes and prayed my little prayer, using the vision that Pastor Mary gave me - which helped immensely. Although I love the nurses, I wish they could just move back just a little. But then again, I am tall. Oy.

Well, even though I was scheduled for a 11pm appt I didn't get into even see my onc till after noon - then didn't start treatment till almost 1 - it was a very long day. However, the reason I was late was because there were 2 newly diagnosed women in front of me starting their treatment yesterday as well. I was immediately asked by the head nurse if I wouldn't mind speaking to them, which I agreed whole heartily immediately. I met a 30 year old woman with a 12 week old baby starting treatment yesterday. She and her husband were there together. I could so relate to the look on her face. She didn't know me, she had a million things racing through her brain, and she was lovely and cordial to me - she certainly didn't have to be. I recognized her expressions so well - the fear, the not knowing, the disbelief, the trying to still act like 'you' when 'you' is suddenly changing so quickly and drastically you can't even keep up with it mentally. People shoving papers in front of you requiring your signature and you have no idea what you are signing you just want to get on with it to just kill this shit so you can try to think about moving on with your life if you can. I felt a little silly at times talking to her - like I was saying such 'cliche' type things. But the one thing I told her, and that I told another woman I met having treatment for the first time, was that she had no idea how strong she really was. That we would never in a million years think we were strong enough to go through something like this but we are - and we do. I told her she would surprise herself. I don't know if I helped, I got a little emotional with her as well - which was, well, awkward. After speaking to her, I went back to where I was sitting and almost broke down. I looked back at her and I'm not exaggerating here, I could feel what she was feeling, literally, feel it. I was overwhelmed by it. I told PJ what I was feeling, and he says this is a gift - my ability to just tap into people. After much consideration, I think it is a gift as well. I think this is God using me to help other people. Suddenly yesterday, it no longer was about me getting my treatment. It was about how I could help someone else get through their first treatment. I could be a face of a young fighter in the midst of a sea of elderly cancer patients - which is a majority of what is in there. I don't know if I helped, I don't really feel like I did - but I know that I felt her fear - and wanted so badly to just take it away from her. It hurts me so much to see others in pain, I can feel others heartache, I am connected. I don't want to try to 'control' this - I'm smart enough to not stay there in that feeling or lose sleep over it or obsess about it - but I think this connection to others validates them - gives them comfort, understanding, acceptance. Isn't that what we all want? Shit I know I sure do. The fact that this young, beautiful woman has her first child and now has the whole experience tainted by this frickin cancer? Are you kidding me? This is outrageous! You mean to tell me they can duplicate a frickin sheep but can't cure fucking cancer? This doesn't make sense! For something that isn't contagious this certainly is feeling a whole lot like it is. Too many people - too many. Ok, stepping off the pedestal now - but only for a drink of water - I seem to lug this thing around with me to use whenever I feel the urge, which was tonight apparently.

Then I get sat w/ a gentleman who had no qualms about discussing anything and everything that was going on with himself medically which, and I think I can handle just about anything, was a bit TMI even for me. Let's put it this way, when he referred to himself as a 'cantaloupe hanging down' in reference with him going to the bathroom - I just picked up a book and started reading. So I went from one extreme to another.

In any case, we got our kids picked up and in my loving arms and back home but it was a long day. Gone from 7:30 am to 4pm. Long day. Then PJ ended up working till the wee hours of the morning and he is at a meeting tonight. Now, I don't know if it's the steroids I'm still on or what, but since I've been taking the supplements recommended to me, I have felt pretty good. Just still have the constipation issue going, which I'm trying to manage with laxatives and stool softeners right now (I keep having flashbacks of my nana drinking her Senekot every night - all I'm missing is the housecoat) but otherwise I'm feeling really good and seem to be tolerating this pretty well. Considering what others are going through this week, I think I'm doing just fine. I'm really looking forward to my surgery coming up on the 10th of Sept so I can get these mini basketballs removed from my chest and some nice squishy implants put in. I am just really focused right now on listening to my body, resting when I need to (or can w/ 2 small children) and taking good care of myself. I need to stay extra healthy for this surgery -need to heal perfectly so this can be over and done with. So ready to have this reconstruction over with. The end is in sight, thank you Jesus.

Well, speaking of resting, I'm off to do that right now. I thank God for everything I have in my life, the people and family around me - and those who hold my own cares above their own. This stupid cancer continues to give me such perspective. Dammit.

God Bless -

No - Even with a prosthetic you can still be an asshole.

2010-08-24T22:21:00.000-07:00

So I'm driving home from picking up Madeline from school when this guy totally crosses the street against the light - which, coming from NY I'm not totally against at all - but you need to cross with purpose, not cross bringing traffic to a stop - which is what this guy did. I mutter something under my breath to make sure Madeline does not hear me when I realize this guy has a prosthetic leg. I suddenly stop and start to feel a little guilty - then come out with the line above. I still stand my this comment, and no, Madeline did not hear me.

So - my workouts provide me such quality enlightenment time, I'm so fortunate to have these moments. I realized that subconsciously we all kinda have what we think our life is going to be like already mapped out in our heads - all of us, don't we? I mean we all just assume we are going to grow old and die one day. But when you get played the cancer card, this kinda throws that subconscious assumption out the window - or at least challenges it. I find this interesting. Something you really never thought about - ever - is suddenly the thing you can't stop thinking about. I know, I don't dwell on it - I just find it an interesting shove into a different reality from the one you thought you existed in. I've also been thinking a lot about my envy towards others and I think I have really embraced something. I need to learn to love this body that God has given me. I need to suck it up, and start coveting my own physicalness - start really appreciating what I've been given and take extra special care of it. What good am I doing me by wasting all my energy looking at what I think other people have? It's not supposed to be easy, it takes work, but I can do this. I will work my ass off for myself. I need to. I can't just sit around and wait for whatever drugs they decide to pump into my body to work - I gotta do my part. I've started taking some supplements on the organic side (all approved by my onc) and now I'm really going to start looking at what I am eating. I just need to take an active part in my own healing here - no matter what the result. I can't just sit and wait for something to happen. I need to change too.

So I have treatment tomorrow and it looks like I'm going to be going by myself, which is really fine. I was kinda butt hurt about it at first, but now, I'm totally ready. It's kind of empowering actually. I still get to take Madeline to school, so at least I get to do that. I miss her so much now that she's in school. It's such a long day. I only get a couple hours with her after school now - but driving to and from school is my most favorite part so far, listening to her talk about school and everything she is learning and doing. I watch her head out to the playground in the mornings and she is just such a free spirit. She has no insecurity, nothing holding her back from anything. She'll go up to kids and just start chatting them up - or just run by herself, smiling and laughing - soooooo not like me. I think I was worried what other people thought of me in kindergarten, no joke. Not sure where that came from, but so glad Madeline doesn't have that - she is so awesome.

I feel like I've been given new eyes - I see my kids so clearly. They are so awesome - I can't believe they are mine sometimes, that God picked me - me - to be their mommy. My girls are so incredibly different from one another, but also so tied to each other and PJ and I at the same intensity. Our little family of four is so cozy, so comfy. We all just love being together, and I just can't soak them up enough. This past news of this cancer continuing to grow really got me for a spell, but I'm not going to let it get the best of me like that again. I'm going to give it my all, with the help of my family and friends. I'm not going to waste anymore time playing the what if game, or poor me. This is it - ya gotta just suck it up and soak it in. My daily devotional the other day spoke of letting her 'feelings' rule instead of her 'faith' rule. This rang so incredibly true to me - I'm such a 'feel' person anyway, constantly operating in 'feel' mode. What I need to do sometimes is turn off the feel and turn on the faith. What a difference.

God Bless -

Dragon Breath

2010-08-22T22:23:00.000-07:00

Well, I can honestly say I am knee deep into chemo side effects. I have the nausea, the head aches, the horrific constipation, and fatigue. Yuk. I'm trying, really trying to just plow on through it - well, listen to it, respond accordingly, and move on. Trying not to wallow in it - really. It would be so easy at this point to just go ' screw it ' and be a constant bitch fest - but who wants to hang around with that person? Right? Plus, hellloooo - I've got kids around me looking all joyful and kid like, I couldn't stay bitchy for too long I suppose. I've armed myself with some probiotics, some ginger tea, and some trusty Miralax - so we'll so how all these things pan out. I'm certainly not going to just 'suffer through it' like before - no way. I will find relief, hopefully in some sort of natural way cuz if you saw the amount of pills (although mostly vitamins) I take each morning, you would think I was like, frickin 80 or something.

The battle between my head and my heart continues - I would be lying if things like this didn't go through my mind every day at some point:

I always hear those stories 'she fought for so long and it finally got the best of her'.
I wonder if my kids will remember me.
I wonder if my husband will remarry.
My husband and I haven't had long enough together yet - we're just getting started on memory making!
Will I look like Helen did when I watched her pass away?
Am I just in denial?
What is everyone else thinking when they hear my story - they are saying how awful it is aren't they?
I don't want anyone to know anymore.
I am going to spend the day as if I am a completely normal person.
I wish I could remember what not knowing felt like, for just a day or two.
Why can't I be the person I am now but just without cancer?
Can I go on Nutri System with cancer?
I need to pray more.
I need to get into the Word more.
I just want to poop - like everyone else.

Well, most of these things I think about every day - give or take some others. These were just a few from today. It's funny, because I may have a fear of dying from this disease, but I don't think I actually believe that I will. Call it denial or not, I just don't see it happening. In my 'fears' I can, but in what is real in my soul I don't - I guess that's good.

I know that this treatment, when we find out it't working, I'll have to continue for a spell. But I hope that I will be able to give it up and give myself a break for six months or so, because the last year and a half have been a real bitch. I do feel more 'physically' able then I have in a awhile. The infusion treatments seem to affect me more internally and the pill form medications I've been on affected me physically. I love my workouts now and really need to keep them a part of my weekly routine - they help me both mentally and physically. I'm able to physically move around with much more ease as of late - which is actually worth quite a lot. Maybe that's why I wasn't supposed to be on the non-working medications, eh? Perhaps. There is a bigger picture, I know this - just soooo wish I was in on the planning of it - my need to know what's comin up, my 'Monica-ness' if you will. This part of my personality is the same part that makes me CRAZY when my kids pull all of their toys out in the room - I don't turn into Mommy Dearest or anything, but I have to walk away and not go on there till the end of the day or I will start tidying till the cows come home. I like things neat, tidy, planned out. Very UNLIKE life, eh? Figures I'd get cancer. Figures.

Well, I need to have some tea and hit the hay. We had a really great weekend this weekend but really threw our whole 'routine' into the wind, which always takes me some time to recover from. We had PJ's dad up for the weekend, and that kind of resulted in many late nights for my kids, which makes for even later nights for me. My girls just light up with their Grandpa is here, it is the sweetest thing. I had a lovely evening with my girls - we watched this wicked cool show on channel 8 about sea turtles, I watched Ginger say 'turtle' like 100 times which was just about the cutest thing I've ever seen (aside from the sound of her eating goldfish crackers) and read stories and prayed and they actually went right to sleep - I think they missed the routine too.

This evening I tuned into my love for my family like I haven't in a long time. They are my lifeline - quite literally. My family holds every sense of my being, and I thank God every day for the gift I have been given - them. Many people in this world rarely know the love I am experiencing for my husband, my children. What a precious gift. Soak it in. Have a great week -

God Bless